1 00:00:01,120 --> 00:00:02,120 Hey! 2 00:00:02,000 --> 00:00:07,000 Downloaded from YTS.MX 3 00:00:02,200 --> 00:00:04,000 [feel-good music] 4 00:00:08,000 --> 00:00:13,000 Official YIFY movies site: YTS.MX 5 00:00:13,760 --> 00:00:15,960 -[feel-good music fades out] -[female vocalizes] 6 00:00:41,920 --> 00:00:43,920 [suspenseful music] 7 00:00:47,640 --> 00:00:49,040 [suspenseful music intensifies] 8 00:01:02,840 --> 00:01:06,080 -[machine beeps] -[suspenseful music mellows] 9 00:01:21,400 --> 00:01:24,000 [girl coughing] 10 00:01:26,360 --> 00:01:28,560 [indistinct chatter] 11 00:01:28,640 --> 00:01:31,080 [suspenseful music continues] 12 00:01:39,840 --> 00:01:40,760 [woman] You okay? 13 00:01:47,800 --> 00:01:49,000 -[scribbling] -[suspenseful music continues] 14 00:02:25,640 --> 00:02:26,840 [breathing heavily] 15 00:02:26,920 --> 00:02:27,720 [clickety-clack of keyboard] 16 00:02:46,600 --> 00:02:48,240 [machine beeps] 17 00:02:49,680 --> 00:02:51,400 [girl] I remember my earliest 18 00:02:51,840 --> 00:02:54,680 memory was, uh, my third birthday. 19 00:02:54,960 --> 00:02:57,040 [splutters] And I still remember the 20 00:02:57,160 --> 00:03:00,480 dress I was wearing and the green flowers and 21 00:03:00,600 --> 00:03:03,120 I was looking like chocolate cake and… 22 00:03:03,520 --> 00:03:06,240 I remember being really normal. 23 00:03:06,480 --> 00:03:10,880 I still watch videos today from my childhood. 24 00:03:10,960 --> 00:03:12,320 -[child sneezes] -[woman] Aishu! 25 00:03:12,920 --> 00:03:14,240 -Hello! -[man] I think we're gonna miss… 26 00:03:14,320 --> 00:03:15,680 -[woman] What are you doing here? -[man] miss our train. 27 00:03:15,760 --> 00:03:16,720 -[woman] No it's said just now, -[girl] I am playing 28 00:03:16,800 --> 00:03:18,560 -fifteen minutes left. -with the snow. Whee! 29 00:03:18,800 --> 00:03:21,440 -[woman] Whoo! -[Aisha] It's fun! Mum! 30 00:03:21,560 --> 00:03:25,160 -Mummy, it's snowing! -[woman whooping] 31 00:03:25,240 --> 00:03:27,160 [woman vocalizing] 32 00:03:27,240 --> 00:03:28,320 I know! 33 00:03:29,160 --> 00:03:31,160 -[camera shutter clicks] -[slow music] 34 00:03:32,920 --> 00:03:34,520 [woman] Aisha just happened. [soft chuckles] 35 00:03:34,880 --> 00:03:37,040 She was the desire of the universe. 36 00:03:37,400 --> 00:03:41,080 Yeah, after having been through something as horrific as I went through with Tanya 37 00:03:41,240 --> 00:03:42,880 [inhales deeply] we were not planning her. 38 00:03:42,960 --> 00:03:44,280 We were not planning a baby. 39 00:03:44,360 --> 00:03:46,440 I must have had the shortest 40 00:03:46,920 --> 00:03:48,800 menstrual cycle of my life. 41 00:03:48,880 --> 00:03:50,760 That's how Aisha was conceived. 42 00:03:51,000 --> 00:03:53,880 [cheering] 43 00:03:53,960 --> 00:03:55,480 Had it not been for my faith, 44 00:03:55,560 --> 00:03:59,520 I think any other sensible person would have just aborted that child. 45 00:03:59,760 --> 00:04:01,800 -[laughs teasingly] -[boy laughs] 46 00:04:02,200 --> 00:04:04,480 [laughs aloud] 47 00:04:04,560 --> 00:04:06,560 [intense music] 48 00:04:10,240 --> 00:04:12,200 [intense music faints] 49 00:04:23,520 --> 00:04:25,400 -[clickety-clack of keyboard] -[ECG machine beeps] 50 00:04:36,640 --> 00:04:38,720 -[machine beeps] -[intense music] 51 00:04:41,200 --> 00:04:42,200 [man] In Vellore… 52 00:04:43,200 --> 00:04:46,880 Tanya had died and we had to take her to Chennai to bring her back to Delhi. 53 00:04:47,480 --> 00:04:52,480 They put Tanya's body inside a plastic bag with ice cubes… 54 00:04:53,560 --> 00:04:55,800 because they didn't want the body to decompose. 55 00:04:56,160 --> 00:04:59,680 And I held her, uh, in my lap for those 56 00:05:00,160 --> 00:05:04,760 hours [sighs] that seemed like, you know, uh… eternity. 57 00:05:05,000 --> 00:05:07,840 And you know, her hair was getting matted, I still remember with that 58 00:05:08,160 --> 00:05:10,960 the… as the ice cubes were melting inside and… 59 00:05:11,240 --> 00:05:13,040 [Niren] And you have such conflicting emotions. 60 00:05:13,120 --> 00:05:14,960 You feel like, "I hope she won't feel cold." [nervous chuckle] 61 00:05:15,040 --> 00:05:16,360 [splutters] You know, just random thoughts. 62 00:05:16,440 --> 00:05:20,040 "I hope she is not uncomfortable." And then you say, "No, but she is dead" and… 63 00:05:20,520 --> 00:05:24,080 -it's just absolutely horrific. -[wind blowing] 64 00:05:31,280 --> 00:05:32,360 -[clickety-clack of keyboard] -[ECG machine beeps] 65 00:05:38,440 --> 00:05:39,720 [ECG machine flatline] 66 00:05:39,800 --> 00:05:42,960 [Niren] For some reason because we were in missionary hospital where Tanya died, 67 00:05:43,040 --> 00:05:45,960 Aditi somehow felt that Tanya has gone to Jesus. 68 00:05:46,040 --> 00:05:48,720 And she wanted to therefore convert to Christianity. 69 00:05:48,840 --> 00:05:50,920 And also have a burial for Tanya. 70 00:05:51,640 --> 00:05:54,000 [woman] Had it not been… [inhales deeply] 71 00:05:54,080 --> 00:05:58,640 for me studying the Bible, hearing, listening 72 00:05:58,760 --> 00:06:00,480 uh, to Bible classes, 73 00:06:00,560 --> 00:06:03,200 I just knew that God wanted me to have more children. 74 00:06:03,400 --> 00:06:05,840 And it was-- Ishaan was a faith baby. 75 00:06:05,920 --> 00:06:07,480 [machine beeps] 76 00:06:09,520 --> 00:06:11,320 [girl] I used to be very close to my brother. 77 00:06:11,800 --> 00:06:13,960 And we used to play games and 78 00:06:14,040 --> 00:06:15,760 -play in the park and-- -[both giggling] 79 00:06:15,840 --> 00:06:19,360 It was quite normal from what I remember. Hmm. 80 00:06:20,040 --> 00:06:21,000 [swing squeaking] 81 00:06:21,080 --> 00:06:24,000 -[boy] Here you go! -[girl screams] 82 00:06:24,400 --> 00:06:27,800 [swing squeaking] 83 00:06:29,120 --> 00:06:31,840 Ishaan was born, and we were happy, and that was the end of it 84 00:06:31,920 --> 00:06:33,560 because we did not want to take the chance, 85 00:06:33,640 --> 00:06:35,960 did not want a repeat of what happened to Tanya. 86 00:06:36,040 --> 00:06:38,400 We thought it would be very very irresponsible. 87 00:06:38,480 --> 00:06:41,760 My faith, you know, really says, "Thou shalt not kill." 88 00:06:41,840 --> 00:06:44,440 There is no caveat in front of it. 89 00:06:44,520 --> 00:06:45,920 There was no escaping it. 90 00:06:46,000 --> 00:06:47,520 I could not kill that child. 91 00:06:47,600 --> 00:06:48,680 [slow intense music] 92 00:06:54,920 --> 00:06:56,960 [clouds rumbling] 93 00:06:59,800 --> 00:07:01,840 [somber music] 94 00:07:05,760 --> 00:07:08,080 [Aditi] Aisha was born with a white coating. 95 00:07:08,160 --> 00:07:10,240 Her tongue was totally white. 96 00:07:10,560 --> 00:07:12,840 And I used to tell the doctors, "Please test it." 97 00:07:12,920 --> 00:07:16,440 Because one of Tanya's first symptoms was fungus in the mouth. 98 00:07:16,520 --> 00:07:18,840 [Niren] It was again, she doesn't seem to recover from 99 00:07:18,920 --> 00:07:22,920 colds and flus and minor illness in quite the same way that you know… 100 00:07:23,960 --> 00:07:25,080 Tanya could not. 101 00:07:27,120 --> 00:07:29,600 [Aisha] It was right after I was born, 102 00:07:29,680 --> 00:07:31,280 all the problems happened. 103 00:07:31,720 --> 00:07:33,720 So, we went to the UK. 104 00:07:34,040 --> 00:07:36,800 And then, that's where I had the transplant and… 105 00:07:37,120 --> 00:07:38,280 that's where… 106 00:07:39,160 --> 00:07:40,680 everything advanced from-- 107 00:07:40,800 --> 00:07:43,360 -[clouds rumbling] -[airplane whirring] 108 00:07:45,000 --> 00:07:47,640 [Niren] We were-- We didn't even have enough money to stay on our own. 109 00:07:47,720 --> 00:07:50,520 We were staying with the Kamats, who are friends from college. 110 00:07:50,600 --> 00:07:52,680 And were godsent, I think. 111 00:07:53,320 --> 00:07:55,280 They were the most wonderful friends we could have had. 112 00:07:56,080 --> 00:07:57,840 [Aditi] I remember our first appointment with 113 00:07:57,920 --> 00:08:01,520 Great Ormond Street was 2nd of August, 1996. 114 00:08:01,760 --> 00:08:06,200 And uh… she was diagnosed, I think, by the 10th of August. 115 00:08:06,440 --> 00:08:09,720 And our worst fears were confirmed that Aisha indeed has… 116 00:08:10,840 --> 00:08:12,640 Severe Combined Immune Deficiency. 117 00:08:12,960 --> 00:08:15,120 [spooky music] 118 00:08:17,520 --> 00:08:19,280 [Aditi] It's a one in a million chance 119 00:08:19,840 --> 00:08:22,160 that two people will meet and 120 00:08:22,240 --> 00:08:24,240 happen to carry the same recessive gene 121 00:08:24,320 --> 00:08:26,600 because the truth is that all of us have 122 00:08:26,720 --> 00:08:28,200 six to eight faulty genes. 123 00:08:28,400 --> 00:08:29,520 We are all carrying them. 124 00:08:30,080 --> 00:08:32,799 But it's only in meeting and marrying somebody with a… 125 00:08:33,559 --> 00:08:35,240 common gene which happens… 126 00:08:35,320 --> 00:08:37,159 The statistic is one in a million. 127 00:08:37,720 --> 00:08:40,679 I knew that my daughter has a terminal illness. 128 00:08:40,880 --> 00:08:42,120 I knew there was a cure. 129 00:08:42,520 --> 00:08:45,720 I knew that I needed to raise 150,000 pounds… 130 00:08:46,200 --> 00:08:48,640 but I didn't know what to do and where to start with it. 131 00:08:48,720 --> 00:08:49,840 [suspenseful music] 132 00:08:59,960 --> 00:09:03,240 [Aditi] The doctors did say that a regular bone marrow transplant 133 00:09:03,320 --> 00:09:06,600 probably the outcome would have been a very half-baked life, 134 00:09:06,680 --> 00:09:08,760 you know, with a lot of medical issues. [inhales deeply] 135 00:09:08,840 --> 00:09:11,480 So, they then proposed that they try the 136 00:09:11,560 --> 00:09:13,560 first stem cell transplant 137 00:09:13,640 --> 00:09:15,520 for Severe Combined Immune Deficiency. 138 00:09:15,600 --> 00:09:17,720 I remember the doctors [inhales deeply] 139 00:09:17,800 --> 00:09:21,760 saying that if we had… if they had cells from a perfect match, 140 00:09:21,840 --> 00:09:24,000 they could actually uh… give that 141 00:09:24,080 --> 00:09:25,920 to Aisha without chemotherapy. 142 00:09:26,000 --> 00:09:27,040 They would try it. 143 00:09:27,520 --> 00:09:29,800 And actually, that would even bring the cost down. 144 00:09:29,880 --> 00:09:31,480 And I remember [inhales deeply] 145 00:09:31,560 --> 00:09:35,240 saying to Niren that I am very happy to conceive a child 146 00:09:35,320 --> 00:09:37,480 and abort that child at three months 147 00:09:37,560 --> 00:09:39,720 in the hope that the cells of that child 148 00:09:39,800 --> 00:09:42,440 would match Aisha's and they could use [inhales deeply] 149 00:09:42,520 --> 00:09:45,240 the cells from the fetus to save Aisha. 150 00:09:45,320 --> 00:09:47,560 [wind blowing] 151 00:09:51,600 --> 00:09:54,000 [Aditi] So, the very woman, the very me 152 00:09:54,160 --> 00:09:55,840 who was not willing to… 153 00:09:56,680 --> 00:09:58,120 abort Aisha 154 00:09:58,440 --> 00:10:01,840 was very willing to abort another child… 155 00:10:02,440 --> 00:10:04,680 at three months or even two months 156 00:10:04,760 --> 00:10:07,680 or do whatever it took to save Aisha's life. 157 00:10:07,760 --> 00:10:10,040 [wind blowing] 158 00:10:11,360 --> 00:10:13,080 [vehicles whirring] 159 00:10:13,200 --> 00:10:14,960 [male radio announcer] On the 25th of March this year, 160 00:10:15,040 --> 00:10:18,160 Aisha Chaudhary was born with Severe Combined Immune Deficiency 161 00:10:18,240 --> 00:10:19,640 known as SCID. 162 00:10:19,720 --> 00:10:22,720 [male radio announcer in Hindi] Aisha's parents have managed 163 00:10:22,800 --> 00:10:24,760 to raise 60,000 pounds from all their savings. 164 00:10:24,840 --> 00:10:26,600 [Niren in English] So, the radio appeal goes out. 165 00:10:26,680 --> 00:10:29,960 -[indistinct radio news] -[Niren] Aisha's story touches the 166 00:10:30,080 --> 00:10:33,160 hearts of a nation that is, you know, not her own. 167 00:10:33,680 --> 00:10:35,560 [male radio announcer] It's hoped that the cost won't be as much as that. 168 00:10:35,640 --> 00:10:38,080 But the Chaudhary family desperately need our help. 169 00:10:38,200 --> 00:10:40,760 Once again, please make your donation payable 170 00:10:40,840 --> 00:10:42,920 -to Great Ormond Street Hospital. -[accordion playing] 171 00:10:43,000 --> 00:10:44,760 [accordion and violin playing] 172 00:10:44,840 --> 00:10:48,400 [Niren] I was taking a taxi and going to the Great Ormond Street. 173 00:10:48,480 --> 00:10:49,600 The taxi stops. 174 00:10:49,680 --> 00:10:52,040 It's a Pakistani driver, and he said to me 175 00:10:52,120 --> 00:10:55,000 that there is a little girl called Aisha in this hospital who is sick. 176 00:10:55,720 --> 00:10:58,720 And he gave me five pounds. He said, "Can you give this to her father 177 00:10:59,040 --> 00:11:00,440 because I believe they don't have money." 178 00:11:00,520 --> 00:11:02,080 And before we know it, 179 00:11:02,160 --> 00:11:05,080 the cheques come flooding into the Sunrise Radio's offices. 180 00:11:05,160 --> 00:11:06,800 [ebullient music] 181 00:11:10,680 --> 00:11:12,600 [Niren] And bringing from two pounds to you know 182 00:11:12,680 --> 00:11:13,880 lots of cheques. 183 00:11:13,960 --> 00:11:16,440 And then we were told on Monday that you know, it's not 150, 184 00:11:16,520 --> 00:11:18,360 it's 250,000 pounds! 185 00:11:18,440 --> 00:11:20,400 [ebullient music continues] 186 00:11:21,720 --> 00:11:25,160 [Niren] I think we had maybe ten days and the whole, one entire room was 187 00:11:25,240 --> 00:11:27,560 filled with envelopes of donations for Aisha. 188 00:11:28,520 --> 00:11:30,320 And I was just 189 00:11:30,400 --> 00:11:33,880 stunned by the generosity of this… this country, you know. 190 00:11:35,040 --> 00:11:37,640 The UK. You know, we were not UK citizens. 191 00:11:37,760 --> 00:11:38,920 We were Indians. 192 00:11:39,000 --> 00:11:40,080 We were visiting. 193 00:11:40,320 --> 00:11:42,360 I just wanted to save the life of my daughter. 194 00:11:42,440 --> 00:11:43,960 [inhales deeply] But how… 195 00:11:44,760 --> 00:11:48,280 you know, how deep inside so many of us are basically good 196 00:11:48,560 --> 00:11:50,120 you realize at moments like that. 197 00:11:50,440 --> 00:11:53,200 That, you know… people have so much goodness in them. 198 00:11:53,280 --> 00:11:56,080 -[Niren clicks tongue] -[instrumental music] 199 00:12:00,160 --> 00:12:02,720 [Aditi] I think Aisha's life was saved because 200 00:12:02,800 --> 00:12:04,960 of what we learnt Tanya's time. 201 00:12:05,040 --> 00:12:06,920 [crowd applauding] 202 00:12:11,840 --> 00:12:15,040 My story is different from most 203 00:12:15,440 --> 00:12:19,080 because I had to undergo a bone marrow transplant 204 00:12:19,320 --> 00:12:21,360 when I was just six months old. 205 00:12:21,960 --> 00:12:25,160 And now, I have pulmonary fibrosis 206 00:12:25,760 --> 00:12:28,440 which is a serious lung disease. 207 00:12:28,920 --> 00:12:30,760 My name is Aisha Chaudhary 208 00:12:30,920 --> 00:12:32,720 and I am 17 years old. 209 00:12:33,520 --> 00:12:36,320 And today, I'd like to talk about 210 00:12:36,720 --> 00:12:39,920 what really matters most to me in life. 211 00:12:40,280 --> 00:12:41,320 -[clickety-clack of keyboard] -[ECG machine beeps] 212 00:12:51,840 --> 00:12:54,400 [intense music] 213 00:12:54,520 --> 00:12:56,000 [beeping continues] 214 00:12:57,680 --> 00:13:00,880 Yeah, Aisha was the first child in Europe 215 00:13:00,960 --> 00:13:03,320 to have a stem cell transplant 216 00:13:03,400 --> 00:13:05,680 for Severe Combined Immune Deficiency. 217 00:13:05,760 --> 00:13:07,280 But just to be on the safe side 218 00:13:07,360 --> 00:13:09,880 because they had never done it before, they also gave her the marrow. 219 00:13:09,960 --> 00:13:11,880 [soft music] 220 00:13:17,880 --> 00:13:21,200 [Niren] My bone marrow and my stem cells, they arrived 221 00:13:21,280 --> 00:13:22,720 in Aisha's room and they were 222 00:13:22,800 --> 00:13:26,680 hooked up and she was basically intravenously given it. 223 00:13:26,960 --> 00:13:28,640 And Aditi kept you know kissing her and saying 224 00:13:28,720 --> 00:13:30,320 "This is from Dad, this is from--" [soft chuckle] 225 00:13:30,400 --> 00:13:32,480 "This is from Dad. Make it work, make it work." 226 00:13:32,560 --> 00:13:34,880 [gasps] Come on, cells! Come on, cells! 227 00:13:34,960 --> 00:13:36,320 -Come on, cells! -[Aisha chuckles] 228 00:13:36,720 --> 00:13:40,120 Come on, cells! Papa's cells! Papa's cells! 229 00:13:41,240 --> 00:13:43,320 This is how madly we play every night 230 00:13:43,400 --> 00:13:45,400 to get the cells to work. Okay? 231 00:13:45,760 --> 00:13:48,520 Okay? Come on, cells! Come on, cells! 232 00:13:48,600 --> 00:13:51,080 [Niren] We were joyous. We said that, you know, this is now-- 233 00:13:51,320 --> 00:13:52,680 We have taken care of it. 234 00:13:53,400 --> 00:13:55,200 She is going to outlive us. 235 00:13:55,440 --> 00:13:57,320 And we said "This was only temporary 236 00:13:57,840 --> 00:13:59,760 that I look after Ishaan 237 00:13:59,840 --> 00:14:02,400 and Aditi looks after Aisha in the hospital." 238 00:14:02,720 --> 00:14:04,160 And soon we would be together. 239 00:14:04,880 --> 00:14:06,520 [Aditi] Come on, do something for my son. 240 00:14:06,920 --> 00:14:09,440 -[Aditi] Ishaan. -What? Is he in there? 241 00:14:09,800 --> 00:14:11,040 [chuckles] 242 00:14:11,120 --> 00:14:13,400 What's he doing inside the video camera? 243 00:14:13,480 --> 00:14:14,840 Well, hello! 244 00:14:15,080 --> 00:14:16,040 [laughs] 245 00:14:16,120 --> 00:14:18,600 Hey! We are going down to see your sister now. 246 00:14:18,680 --> 00:14:19,600 -Alright. -[Aditi] Come on, let's go. 247 00:14:19,680 --> 00:14:22,040 [boy] I remember Mum would send me these videos 248 00:14:22,240 --> 00:14:24,320 like walking me through the hospital, 249 00:14:24,400 --> 00:14:27,120 to explain everything and seeing some clowns. 250 00:14:27,200 --> 00:14:29,680 I remember one in particular. I was staying at my grandparents' 251 00:14:29,760 --> 00:14:31,640 at that time and I came home from school. 252 00:14:31,720 --> 00:14:35,720 And I was really excited because there was a tape from my mom that… 253 00:14:36,360 --> 00:14:38,520 definitely stuck in my memory and that was one of the 254 00:14:38,600 --> 00:14:41,520 first times I realized you know like she isn't that well. 255 00:14:41,600 --> 00:14:43,280 Even though I was young, I kind of knew. 256 00:14:43,800 --> 00:14:45,640 Hi, Ishaan darling. 257 00:14:45,720 --> 00:14:47,000 This is Mumma. 258 00:14:47,080 --> 00:14:48,720 -Mumma will come back in a few days. -[Aisha sneezes] 259 00:14:48,800 --> 00:14:50,080 -God bless you. -[Aisha sneezes again] 260 00:14:50,160 --> 00:14:53,000 God bless you, Aisha darling. [gasps] 261 00:14:53,080 --> 00:14:55,680 God bless you, sweetheart. Here, Ishaan, see. 262 00:14:56,600 --> 00:14:58,040 [Aditi] This is Aisha darling. 263 00:14:58,200 --> 00:15:00,440 Oh, no! She has taken her tube out of her nose. 264 00:15:00,520 --> 00:15:02,360 -[Aisha coughs] -Oh, my God! 265 00:15:02,440 --> 00:15:03,480 [eerie music] 266 00:15:03,560 --> 00:15:05,800 -[Aisha crying] -[Aditi mumbles] 267 00:15:08,360 --> 00:15:13,120 [mumbling continues] 268 00:15:15,240 --> 00:15:17,360 [soft piano music] 269 00:15:19,640 --> 00:15:22,080 [car whizzing] 270 00:15:25,280 --> 00:15:27,280 -[vehicles honking] -[eerie music continues] 271 00:15:28,760 --> 00:15:30,240 [Aditi] Nine months was a long time. 272 00:15:30,320 --> 00:15:33,000 I was really suffering emotionally without Ishaan. 273 00:15:33,080 --> 00:15:35,640 You know, and I had no support system in the UK at all. 274 00:15:35,720 --> 00:15:37,240 We were alone, Aisha and me. 275 00:15:39,000 --> 00:15:41,000 Hey, sweetie! [squeaks] 276 00:15:41,400 --> 00:15:43,640 [Aisha babbles] 277 00:15:43,880 --> 00:15:45,680 [Aditi] My mother came for three-four months 278 00:15:45,760 --> 00:15:48,760 and that was like a huge relief but uh… 279 00:15:48,840 --> 00:15:50,400 I was really feeling depressed. 280 00:15:50,480 --> 00:15:51,880 I mean I think I was-- 281 00:15:51,960 --> 00:15:55,000 Today I can say I was probably clinically depressed at that time. 282 00:15:55,080 --> 00:15:57,320 [clouds rumbling] 283 00:15:57,400 --> 00:15:58,360 -[clickety-clack of keyboard] -[eerie music] 284 00:16:00,560 --> 00:16:03,880 [Aditi] Niren realized that I could no longer handle this alone 285 00:16:03,960 --> 00:16:05,600 and he would have to move to the UK 286 00:16:05,680 --> 00:16:08,000 because it takes ten years for a transplanted 287 00:16:08,080 --> 00:16:10,160 immune system to completely mature. 288 00:16:11,520 --> 00:16:14,800 [feel-good music] 289 00:16:17,120 --> 00:16:21,000 [Aisha] I was in isolation for the first five years of my life. 290 00:16:21,120 --> 00:16:22,600 Basically, no one 291 00:16:23,040 --> 00:16:26,160 my age could… I couldn't be really be around them. 292 00:16:26,440 --> 00:16:28,520 So, I guess that kind of 293 00:16:28,880 --> 00:16:32,440 made me a little awkward and a little shy. 294 00:16:33,040 --> 00:16:35,120 So, I have always had very few friends. 295 00:16:35,200 --> 00:16:36,760 [soft music] 296 00:16:45,480 --> 00:16:47,960 [scribbling] 297 00:16:52,680 --> 00:16:55,440 [Niren] I think the initial years uh… when I was working in Holland, 298 00:16:55,520 --> 00:16:58,200 [inhales deeply] I was working there Monday to Friday. 299 00:16:58,520 --> 00:17:01,000 And then on the weekends, I would come back home. 300 00:17:01,080 --> 00:17:02,000 ["Dil Le Gayi Kudi" by Jasbir Bassi playing] 301 00:17:02,080 --> 00:17:03,920 [Aditi laughing] Aisha! 302 00:17:09,520 --> 00:17:10,440 Oh! 303 00:17:10,640 --> 00:17:11,640 [Niren] So, that was hard. 304 00:17:12,040 --> 00:17:14,079 Uh… I did three years of that. 305 00:17:14,160 --> 00:17:18,240 Being there on the weekends and just uh, trying to make memories with them. 306 00:17:18,319 --> 00:17:20,720 [jet boat whirring] 307 00:17:26,240 --> 00:17:28,359 [Niren] I remember Aditi was away for some work 308 00:17:28,440 --> 00:17:31,160 and I took Ishaan and Aisha for a holiday. 309 00:17:31,400 --> 00:17:33,240 -[engine revving] -[water splashing] 310 00:17:33,320 --> 00:17:34,960 -[boy] Oh! -[man] Did you see that? 311 00:17:35,040 --> 00:17:39,400 [Niren] And we used to have a fight every night, Aisha and me. 312 00:17:39,880 --> 00:17:42,240 Every night and several times during the day. 313 00:17:42,640 --> 00:17:45,680 [Niren] Aisha… did you have a nice time? 314 00:17:46,200 --> 00:17:47,120 Hmm. 315 00:17:49,040 --> 00:17:50,040 [Niren] Why? 316 00:17:51,160 --> 00:17:54,480 -[boy] We played with the sand. -[girl] No. Just… 317 00:17:55,200 --> 00:17:56,480 not right. 318 00:17:57,800 --> 00:18:00,240 -[Niren] Are you missing Mummy? -Mm-hmm. 319 00:18:00,400 --> 00:18:02,480 -[Aisha] Mm-hmm. -[waves crashing] 320 00:18:06,720 --> 00:18:08,960 [Niren] Aisha missed out I think those two years of 321 00:18:09,040 --> 00:18:11,400 just having a normal childhood with the sense of 322 00:18:11,480 --> 00:18:13,320 you know playing with the little kids and… 323 00:18:13,400 --> 00:18:15,840 [splutters] and she became therefore as a result 324 00:18:15,960 --> 00:18:17,560 very very attached to Aditi. 325 00:18:17,640 --> 00:18:19,760 So, I was an intrusion 326 00:18:20,320 --> 00:18:21,360 in her life. 327 00:18:21,440 --> 00:18:24,600 Here was this guy who was suddenly there in between 328 00:18:25,160 --> 00:18:26,440 Aisha and Aditi. 329 00:18:29,760 --> 00:18:31,600 -[cursor clicks] -[eerie music] 330 00:18:33,360 --> 00:18:35,320 [Aditi] So, there is a lady called Barb Ballard 331 00:18:35,400 --> 00:18:37,000 who started this SCID mail group. 332 00:18:37,080 --> 00:18:40,080 Her son Ray has SCID. They are in the US. 333 00:18:40,360 --> 00:18:43,800 Almost 20 years ago when this group was started it was really 334 00:18:43,880 --> 00:18:46,400 uh… not just a support for the parents. 335 00:18:46,600 --> 00:18:48,800 It was also meant to uh 336 00:18:48,880 --> 00:18:51,160 help doctors to make better decisions. 337 00:18:51,240 --> 00:18:53,040 [slow music] 338 00:18:56,600 --> 00:18:57,480 [cursor clicks] 339 00:19:12,000 --> 00:19:14,240 [indistinct cheering and chatter] 340 00:19:14,320 --> 00:19:16,680 -[woman 1] Come on, Aisha! -[woman 2] Yay! 341 00:19:16,760 --> 00:19:18,520 [Aditi] Aisha has won! 342 00:19:18,600 --> 00:19:21,800 -Yay! Well done, Aisha! -[woman] Well done! 343 00:19:21,880 --> 00:19:23,920 [nursery rhyme] 344 00:19:24,640 --> 00:19:26,320 [Aditi] We put her in a playschool. 345 00:19:26,680 --> 00:19:28,520 But she would never speak to any of the children. 346 00:19:28,600 --> 00:19:30,240 She spoke to all the teachers, but she 347 00:19:30,440 --> 00:19:31,960 ignored all the children. 348 00:19:32,160 --> 00:19:33,720 She just never spoke to them. 349 00:19:33,800 --> 00:19:35,240 [eerie music] 350 00:19:37,600 --> 00:19:39,640 [piano music] 351 00:19:57,360 --> 00:19:59,680 [Aditi] I remember from the SCID mail group 352 00:19:59,880 --> 00:20:03,600 they said that children who have bone marrow transplants 353 00:20:03,680 --> 00:20:07,480 because they beat death, they defy death when they are very very little, 354 00:20:08,040 --> 00:20:10,600 they start to feel uh… 355 00:20:10,680 --> 00:20:12,320 very big inside them. 356 00:20:12,400 --> 00:20:15,520 They feel like they are more important than the rest of the world. 357 00:20:15,600 --> 00:20:17,680 [eerie music continues] 358 00:20:22,920 --> 00:20:25,160 Aisha felt hurt very quickly 359 00:20:25,560 --> 00:20:28,160 uh, because she really craved 360 00:20:28,640 --> 00:20:30,040 uh… friendships. 361 00:20:30,480 --> 00:20:32,960 Peer relationships always were hard for her. 362 00:20:44,640 --> 00:20:45,600 [clickety-clack of keyboard] 363 00:20:47,920 --> 00:20:50,880 [children screaming] Higher! Higher! 364 00:20:50,960 --> 00:20:53,080 Higher! Higher! 365 00:20:53,160 --> 00:20:55,640 [children cheering] 366 00:20:59,520 --> 00:21:01,240 [woman] And she's coming back. 367 00:21:01,320 --> 00:21:02,760 [Aisha screaming] 368 00:21:03,240 --> 00:21:04,920 [Aditi] And I remember when Niren told us 369 00:21:05,000 --> 00:21:07,680 that we will be moving to Holland, she was quite happy 370 00:21:07,880 --> 00:21:11,840 because she said, "Oh, now I won't have to you know, handle them!" 371 00:21:14,040 --> 00:21:17,440 ♪ Say that you love me ♪ 372 00:21:17,520 --> 00:21:22,200 ♪ Tell me that you'll always be around ♪ 373 00:21:22,440 --> 00:21:24,920 -[Aisha] I was learning acting, -[woman] Hmm. 374 00:21:25,000 --> 00:21:26,240 I went to uh, um… 375 00:21:26,840 --> 00:21:28,520 I went to the LAMBDA School of… 376 00:21:29,320 --> 00:21:30,800 like, the drama school. 377 00:21:30,880 --> 00:21:32,880 -[woman] Yeah. -And then I used to do plays 378 00:21:33,360 --> 00:21:35,720 -after school, so that was my interest… -[Niren singing] 379 00:21:35,800 --> 00:21:36,800 in Holland. 380 00:21:37,080 --> 00:21:40,760 The first signs of problem which I guess 381 00:21:40,840 --> 00:21:43,080 I didn't realize was such a huge issue was that 382 00:21:43,160 --> 00:21:47,120 her uh… height was very less for her age. 383 00:21:47,200 --> 00:21:48,640 [Aditi] But the doctor said, "As long as 384 00:21:48,720 --> 00:21:51,080 she is running parallel to the growth chart, 385 00:21:51,160 --> 00:21:53,760 even though her growth is way below, it doesn't matter 386 00:21:53,840 --> 00:21:55,840 because the chemo will affect her height." 387 00:21:55,920 --> 00:21:57,880 [upbeat music] 388 00:21:57,960 --> 00:21:59,960 [indistinct chatter] 389 00:22:02,440 --> 00:22:04,720 [Niren] As we saw her with her friends, 390 00:22:04,800 --> 00:22:07,280 and you visibly start seeing the difference 391 00:22:07,360 --> 00:22:09,840 and then you know that there is… it is not normal. 392 00:22:09,920 --> 00:22:14,720 [Aditi] By the year 2005, they had discovered that even though Aisha 393 00:22:14,800 --> 00:22:18,960 had normal levels of growth hormones, something had obviously gone wrong. 394 00:22:19,040 --> 00:22:21,640 And uh… she was not growing in height or weight. 395 00:22:21,720 --> 00:22:23,920 [Aditi] She had functional issues with it. 396 00:22:24,000 --> 00:22:27,200 Like when she was in a group of people, she couldn't hear what people were saying. 397 00:22:27,280 --> 00:22:29,360 If there was a lot of background noise or music, 398 00:22:29,440 --> 00:22:31,000 she couldn't hear them because she was just 399 00:22:31,080 --> 00:22:33,320 way lower than where her friends were. 400 00:22:33,600 --> 00:22:36,160 And then we got her checked out in the Netherlands. 401 00:22:36,400 --> 00:22:40,800 And there, they said that her body is producing the growth hormones. 402 00:22:42,000 --> 00:22:43,920 But they are having no impact. 403 00:22:44,000 --> 00:22:45,360 -[cursor clicks] -[eerie music] 404 00:22:49,000 --> 00:22:50,000 [eerie music intensifies] 405 00:22:52,240 --> 00:22:55,440 [Aditi] So, they started on the growth hormone only as a test case. 406 00:22:55,520 --> 00:22:58,000 And actually she was the only one in our group who 407 00:22:58,080 --> 00:22:59,280 had such a picture 408 00:22:59,720 --> 00:23:02,520 that there was nothing wrong with her growth hormone levels. 409 00:23:02,760 --> 00:23:04,120 But she was not growing. 410 00:23:04,200 --> 00:23:05,840 -[scribbling] -[ECG machine beeps] 411 00:23:21,120 --> 00:23:23,760 [Niren] She ended up getting bullied a lot because of that. 412 00:23:23,960 --> 00:23:26,000 Kids in the bus also used to taunt her. 413 00:23:26,160 --> 00:23:27,720 Make all kinds of uh… 414 00:23:27,800 --> 00:23:30,200 remarks about how small she was and how 415 00:23:30,360 --> 00:23:32,880 actually she is a liar because she can't be that… 416 00:23:32,960 --> 00:23:34,920 that old and she is much younger. 417 00:23:39,240 --> 00:23:42,080 [Aditi] And I remember she got off the bus one day and she just broke down 418 00:23:42,160 --> 00:23:43,720 and she said, "I can't take it anymore. 419 00:23:43,800 --> 00:23:45,480 I am so small… [inhales deeply] 420 00:23:45,560 --> 00:23:48,040 that everyone thinks that it's okay to bully me. 421 00:23:48,440 --> 00:23:50,000 And I just don't want to live anymore. 422 00:23:50,080 --> 00:23:52,240 -I just wish I was dead." -[scribbling] 423 00:23:52,320 --> 00:23:54,400 [eerie music intensifies] 424 00:24:00,360 --> 00:24:01,520 [eerie music fades out abruptly] 425 00:24:01,600 --> 00:24:02,840 [clickety-clack of keyboard] 426 00:24:14,880 --> 00:24:17,640 [ECG machine beeps] 427 00:24:19,640 --> 00:24:21,560 -[Aditi] Doggy? -[Aisha] This is Kobe. 428 00:24:21,640 --> 00:24:24,480 Say hi, Kobe! Hi! 429 00:24:25,560 --> 00:24:29,320 [Ishaan] Aisha and I decided that we really wanted a labrador. 430 00:24:29,400 --> 00:24:31,960 The minute we got there, he was the first one to walk over 431 00:24:32,040 --> 00:24:34,720 -[dog barks subtly] -and I was like, "He looks like a Kobe." 432 00:24:35,000 --> 00:24:36,880 And she was like, "Yeah, he does." 433 00:24:37,160 --> 00:24:38,800 This is my Kobe hug. 434 00:24:39,320 --> 00:24:41,360 [Aisha] I find it so interesting 435 00:24:41,960 --> 00:24:44,400 that even though they can't speak a word 436 00:24:44,760 --> 00:24:48,840 dogs can become the closest thing to your heart. 437 00:24:49,360 --> 00:24:52,480 Your very best friend and your companion. 438 00:24:52,880 --> 00:24:54,680 I love to observe them 439 00:24:54,800 --> 00:24:56,360 and try to figure them out. 440 00:24:56,720 --> 00:24:59,400 And I can't help but get inspired. 441 00:25:00,840 --> 00:25:04,080 Dogs are so similar to humans 442 00:25:04,160 --> 00:25:06,000 yet they carry qualities 443 00:25:06,200 --> 00:25:09,680 that we humans struggle to achieve at times. 444 00:25:10,200 --> 00:25:14,040 Dogs can find happiness in the smallest of things. 445 00:25:14,600 --> 00:25:17,880 [emphasizes] Dogs are delighted with a walk, 446 00:25:18,240 --> 00:25:20,880 ecstatic with a small treat, 447 00:25:21,280 --> 00:25:23,760 and in heaven when you tickle their belly. 448 00:25:23,840 --> 00:25:25,320 -[Aisha giggles] -[Kobe whines] 449 00:25:29,520 --> 00:25:30,840 [happy music] 450 00:25:33,840 --> 00:25:36,080 [children speaking indistinctly] 451 00:25:37,640 --> 00:25:39,000 [children squealing] 452 00:25:39,240 --> 00:25:40,400 [boy] It got on you. 453 00:25:40,840 --> 00:25:43,560 [Aditi] She was very very happy when three months later 454 00:25:43,640 --> 00:25:46,000 you know there was a shift in her growth chart. 455 00:25:46,080 --> 00:25:49,160 So, then they tested her to see if her ovaries were working. 456 00:25:49,400 --> 00:25:51,720 -[clouds rumbling] -And they realized that even her ovaries 457 00:25:51,800 --> 00:25:53,760 had been damaged by the chemotherapy. 458 00:25:54,000 --> 00:25:57,320 So, she would not enter puberty naturally. 459 00:25:57,560 --> 00:25:59,880 Uh… she had to have medical help for that. 460 00:26:00,840 --> 00:26:03,480 Because Aisha said, "So, I will never be a mummy." 461 00:26:03,920 --> 00:26:05,400 And I said, "It doesn't matter. 462 00:26:05,480 --> 00:26:07,160 You know you can always adopt children." 463 00:26:07,240 --> 00:26:09,040 -[man talking indistinctly] -[Aisha] Woo-hoo! 464 00:26:09,760 --> 00:26:11,720 [children screaming] 465 00:26:14,360 --> 00:26:17,360 [Aditi] So, the chemo had caused quite a lot of damage but 466 00:26:17,720 --> 00:26:19,320 the doctors were very very clear that 467 00:26:19,400 --> 00:26:21,480 without the chemo, she would not have survived. 468 00:26:21,560 --> 00:26:22,880 [soft piano music] 469 00:26:24,040 --> 00:26:26,520 [soft music] 470 00:26:33,000 --> 00:26:36,360 [Aditi] In 2007, Niren was offered this position 471 00:26:36,440 --> 00:26:38,640 to move to India with the "Yum"… 472 00:26:39,360 --> 00:26:41,600 and he was so keen to take it. 473 00:26:42,080 --> 00:26:45,160 I just didn't want to take the chance with Aisha's health. 474 00:26:45,560 --> 00:26:49,800 So, I spent almost 20 days talking to different doctors. 475 00:26:49,880 --> 00:26:52,920 We had all her tests redone at Great Ormond Street. 476 00:26:53,000 --> 00:26:55,640 Doctors at Great Ormond Street had no concern. 477 00:26:55,720 --> 00:26:58,360 [soft music continues] 478 00:27:06,200 --> 00:27:07,640 I spoke to the doctors in India. 479 00:27:07,720 --> 00:27:10,200 Most of them kind of said, "Don't come back." 480 00:27:10,280 --> 00:27:11,640 [chuckles softly] 481 00:27:11,720 --> 00:27:14,400 [soft music continues] 482 00:27:18,040 --> 00:27:19,960 A family is made up of four people. 483 00:27:20,280 --> 00:27:23,080 It cannot all and only be about Aisha. 484 00:27:23,760 --> 00:27:27,040 [all] Bye, Aisha! Bye! 485 00:27:27,320 --> 00:27:30,080 -[Aditi chuckles] Thank you! -Bye-bye. 486 00:27:30,640 --> 00:27:32,760 -[girl coughs] -[Aditi] Hey, Aisha! 487 00:27:32,840 --> 00:27:33,960 -Yeah? -[indistinct chatter] 488 00:27:34,040 --> 00:27:35,680 [Aditi] Do you have anything to say? 489 00:27:35,760 --> 00:27:37,280 Yeah, I'll miss everyone. 490 00:27:37,360 --> 00:27:39,360 [soft music] 491 00:27:47,840 --> 00:27:49,280 -[boy] Ow! -[woman 1] Hey! 492 00:27:49,360 --> 00:27:51,320 -[girl screaming] -[man] Come on! 493 00:27:51,400 --> 00:27:53,000 -Give me! -[indistinct cheer] 494 00:27:53,160 --> 00:27:55,720 -[indistinct chatter] -[girl squeals] 495 00:27:55,800 --> 00:27:57,240 Whoo! 496 00:27:57,320 --> 00:27:59,280 [chants a hymn] 497 00:28:12,720 --> 00:28:15,360 -[Niren] Aisha, say "Happy Bhaiyya Duj"-- -[Aisha giggles] 498 00:28:15,440 --> 00:28:17,360 "Happy Bhaiya." [giggles] 499 00:28:17,440 --> 00:28:18,880 -[Niren] Whatever! -Eat it! 500 00:28:19,440 --> 00:28:21,160 -[Niren and Aisha chuckle softly] -Ah! 501 00:28:21,800 --> 00:28:23,360 [Niren] Alright! 502 00:28:23,440 --> 00:28:24,360 [boy squeals] 503 00:28:24,440 --> 00:28:26,520 [soft music] 504 00:28:30,200 --> 00:28:31,720 [Aditi] Aw! 505 00:28:33,440 --> 00:28:35,480 [soft music intensifies] 506 00:28:37,880 --> 00:28:39,080 [indistinct chatter] 507 00:28:39,160 --> 00:28:41,880 -[drumming] -[indistinct chatter] 508 00:29:05,560 --> 00:29:06,600 -[drumming fades out] -[clickety-clack of keyboard] 509 00:29:13,480 --> 00:29:17,800 [Aditi] I remember taking her to Dr. Taneja in India 510 00:29:18,200 --> 00:29:21,360 just to have her American school form filled out. 511 00:29:21,440 --> 00:29:23,160 It was him who noticed 512 00:29:23,240 --> 00:29:25,360 that she had a slight uh 513 00:29:25,440 --> 00:29:28,040 caving on her chest on the left side. 514 00:29:28,120 --> 00:29:29,920 -[eerie music] -[clicking] 515 00:29:36,640 --> 00:29:38,360 [serious music] 516 00:29:48,240 --> 00:29:49,080 [clicking] 517 00:30:06,760 --> 00:30:10,320 [Aditi] I rushed her to the UK and that's the first time we knew that 518 00:30:10,400 --> 00:30:13,000 you know she had only 40 percent lung capacity. 519 00:30:13,080 --> 00:30:15,080 [wind blowing] 520 00:30:17,120 --> 00:30:20,080 Doctor said, "It's okay, she won't run a marathon. 521 00:30:20,160 --> 00:30:22,040 But you know it won't be the end of the world. 522 00:30:22,120 --> 00:30:23,560 We will keep an eye on it. 523 00:30:23,640 --> 00:30:25,960 This is a side effect from the transplant 524 00:30:26,040 --> 00:30:28,120 but you know, it's not going to be life threatening." 525 00:30:28,200 --> 00:30:30,480 [all cheering and applauding] 526 00:30:34,320 --> 00:30:35,200 -[cell phone chimes] -[waves crashing] 527 00:30:36,160 --> 00:30:37,400 -[eerie music] -[cell phone chimes] 528 00:30:40,000 --> 00:30:40,800 [cell phone chimes] 529 00:30:42,320 --> 00:30:43,320 [cell phone chimes] 530 00:30:44,320 --> 00:30:46,600 [Aditi] She would often say, "Why am I so thin?" 531 00:30:46,880 --> 00:30:49,960 And then I would say, "Eat! Eat some more." 532 00:30:50,040 --> 00:30:52,080 She used to say, "I don't know what is wrong. 533 00:30:52,360 --> 00:30:55,440 You know, I take two bites and I am really hungry. 534 00:30:55,520 --> 00:30:58,480 And I order this big meal. I take two bites and I am full." 535 00:31:00,080 --> 00:31:01,360 -[indistinct chatter] -[cell phone chimes] 536 00:31:02,800 --> 00:31:03,880 [cell phone chimes] 537 00:31:03,960 --> 00:31:04,840 [slow music] 538 00:31:12,080 --> 00:31:16,480 [Aditi] Aisha was assessed as too below weight 539 00:31:16,560 --> 00:31:19,240 because she wasn't able to orally take 540 00:31:19,720 --> 00:31:22,920 as many calories as she needed to put on weight. 541 00:31:23,160 --> 00:31:24,760 They decided that we should now 542 00:31:24,840 --> 00:31:28,920 insert a mic-key button into her stomach and she should be fed through the stomach. 543 00:31:29,000 --> 00:31:30,960 -[man speaking indistinctly] -[all screaming] 544 00:31:31,040 --> 00:31:33,360 [water thrashing] 545 00:31:41,000 --> 00:31:43,400 [Aisha] I have a tube in my stomach. 546 00:31:43,680 --> 00:31:46,440 So… it's a feeding tube. 547 00:31:47,160 --> 00:31:48,720 To wanna have to put that in, 548 00:31:48,960 --> 00:31:52,600 that was the most painful thing I've experienced. 549 00:31:52,680 --> 00:31:54,200 It was a whole surgery. 550 00:31:54,320 --> 00:31:57,320 -And they put a disc inside your… -[woman] Hmm. 551 00:31:57,600 --> 00:32:01,920 your stomach, and then it's attached to a tube. 552 00:32:02,320 --> 00:32:05,240 -So um… when I had to put that in -[ECG machine beeps] 553 00:32:05,320 --> 00:32:07,760 that was the most painful thing I have 554 00:32:07,960 --> 00:32:10,720 ever experienced. [hesitates] Because I have never 555 00:32:10,800 --> 00:32:13,920 remembered having surgery 556 00:32:14,120 --> 00:32:16,560 -so that was the first, you know like -[woman] Hmm. 557 00:32:16,640 --> 00:32:18,440 thing um… I remember like 558 00:32:18,520 --> 00:32:23,360 screaming in pain after I woke up and staring at the wall 559 00:32:23,520 --> 00:32:25,920 not knowing what had happened. 560 00:32:26,440 --> 00:32:28,400 So, that was really tough. 561 00:32:29,040 --> 00:32:31,280 [ECG machine beeps] 562 00:32:40,760 --> 00:32:41,720 [clickety-clack of keyboard] 563 00:32:54,480 --> 00:32:55,280 [cell phone chimes] 564 00:32:57,160 --> 00:32:57,960 [poignant music] 565 00:32:59,560 --> 00:33:00,760 -[piano music] -[cell phone chimes] 566 00:33:02,400 --> 00:33:03,400 [cell phone chimes] 567 00:33:04,800 --> 00:33:05,760 [cell phone chimes] 568 00:33:18,800 --> 00:33:21,840 [Niren] She was put on a certain type of steroids. 569 00:33:22,200 --> 00:33:26,120 Now these steroids… the side effect is that they 570 00:33:26,480 --> 00:33:28,600 have an impact on your muscles. 571 00:33:29,600 --> 00:33:32,040 And although they open up your lungs, 572 00:33:32,480 --> 00:33:35,640 they actually waste away your muscles and you can lose mobility. 573 00:33:38,440 --> 00:33:39,560 [Niren] And Aisha… 574 00:33:40,360 --> 00:33:43,040 suddenly from one day to the other was unable to walk. 575 00:33:43,760 --> 00:33:45,040 [clicks tongue] One night I remember that 576 00:33:45,360 --> 00:33:48,200 I suddenly heard Aisha screaming at night. 577 00:33:49,280 --> 00:33:50,600 And I ran to the room. 578 00:33:51,040 --> 00:33:52,680 She said to me that "Dad… 579 00:33:53,360 --> 00:33:54,760 something's happened to Kobe." 580 00:33:55,320 --> 00:33:56,480 So, I look at Kobe. 581 00:33:56,560 --> 00:33:58,960 And Kobe is, you know, quite a young stud at that time. 582 00:33:59,040 --> 00:34:00,760 He was maybe six to seven years old. 583 00:34:01,160 --> 00:34:03,520 [Niren] And he was just whimpering in a corner near her bed. 584 00:34:03,600 --> 00:34:05,960 And I asked him to get up and he just couldn't get up. 585 00:34:06,720 --> 00:34:09,520 He tried to get up and his legs would shake and he just fell down. 586 00:34:09,760 --> 00:34:13,120 [inhales deeply] And she started crying and saying, "What has happened to Kobe?" 587 00:34:13,199 --> 00:34:15,679 And she told me that you have to take him right now. 588 00:34:15,760 --> 00:34:17,360 It's the middle of the night, two o'clock. 589 00:34:17,800 --> 00:34:19,800 "Take him right now to a doc! 590 00:34:20,440 --> 00:34:22,120 And make sure that he is okay." 591 00:34:22,520 --> 00:34:24,440 And after maybe two hours of me roaming around 592 00:34:24,520 --> 00:34:26,400 trying to find a doctor which I couldn't. 593 00:34:26,520 --> 00:34:28,480 I just opened the boot of the car. 594 00:34:28,840 --> 00:34:31,199 And this guy just bounded out as if nothing had happened 595 00:34:31,280 --> 00:34:32,600 and started running like mad. 596 00:34:34,480 --> 00:34:36,480 -[Kobe barks] -[happy music] 597 00:34:37,040 --> 00:34:39,320 [Aisha laughs] Oh, my God! 598 00:34:39,400 --> 00:34:41,600 [laughing continues] 599 00:34:41,920 --> 00:34:43,520 [Niren] Now I had heard of this thing of you know 600 00:34:43,719 --> 00:34:45,960 dogs are so faithful and so loyal 601 00:34:46,800 --> 00:34:49,040 that they take away the illness of the master. 602 00:34:49,639 --> 00:34:51,320 And whoever they are closest to, 603 00:34:51,760 --> 00:34:53,280 they start reflecting that. 604 00:34:56,520 --> 00:34:58,880 And then I think we changed her medication. 605 00:34:59,560 --> 00:35:02,240 Gave her steroids that didn't have the same side effect. 606 00:35:02,720 --> 00:35:05,880 And… slowly her mobility came back. 607 00:35:07,920 --> 00:35:09,640 [Aisha imitates Bob Marley] I… I am the one and only… 608 00:35:10,680 --> 00:35:11,920 Bob Marley! 609 00:35:12,040 --> 00:35:14,360 [upbeat music] 610 00:35:19,880 --> 00:35:21,960 -Yo! [giggles] -♪ Move to the groove ♪ 611 00:35:22,040 --> 00:35:23,240 [Aisha and Niren giggle] 612 00:35:23,680 --> 00:35:24,600 ♪ Let go ♪ 613 00:35:25,440 --> 00:35:27,480 ♪ As the rhythm grows ♪ 614 00:35:27,960 --> 00:35:30,800 ♪ Hands in the air ♪ 615 00:35:31,280 --> 00:35:32,600 ♪ Let 'em pop ♪ 616 00:35:33,360 --> 00:35:37,000 -♪ When the beat drops ♪ -[Aisha breathes heavily] 617 00:35:39,000 --> 00:35:41,720 -[wind blowing] -[Aisha breathes heavily] 618 00:35:49,320 --> 00:35:54,560 In 2009, November, Aisha collapsed on the stairs in school. 619 00:35:54,640 --> 00:35:56,800 So, when we took her, that was the first time 620 00:35:56,880 --> 00:36:00,040 that they noticed that there was a drop in the lung function. 621 00:36:00,120 --> 00:36:01,640 -[Niren] And she has something called -[ambulance siren wailing] 622 00:36:01,800 --> 00:36:03,520 pulmonary fibrosis. 623 00:36:03,880 --> 00:36:07,000 That's the first time I heard of pulmonary fibrosis. 624 00:36:08,360 --> 00:36:10,240 He uh… drew this graph 625 00:36:10,320 --> 00:36:12,120 and said, "Well, just to explain to you, 626 00:36:12,200 --> 00:36:14,560 you know her lung capacity was at 40 percent. 627 00:36:14,840 --> 00:36:16,840 Now it's here at 35 percent. 628 00:36:17,320 --> 00:36:20,560 And uh… you know it could go all the way down to zero 629 00:36:21,240 --> 00:36:23,880 uh… in time or it could… 630 00:36:23,960 --> 00:36:27,440 sort of go like this and just stabilize at some point. 631 00:36:31,800 --> 00:36:33,520 [Aditi] Ishaan started crying. 632 00:36:33,600 --> 00:36:36,640 Niren had tears running down his face. I was crying. 633 00:36:36,920 --> 00:36:40,280 I knew she had heard and I knew that she knew what that meant. 634 00:36:40,360 --> 00:36:42,720 [sad music] 635 00:36:44,480 --> 00:36:45,760 [Niren] That basically meant that you'll-- 636 00:36:45,840 --> 00:36:47,120 It's the hardening of the lung. 637 00:36:47,640 --> 00:36:50,520 One of the things that causes it can be chemotherapy. 638 00:36:50,720 --> 00:36:54,160 -[slow music] -[waves crashing] 639 00:36:59,320 --> 00:37:01,560 [Niren] It's irreversible, so, your lungs just get harder 640 00:37:01,640 --> 00:37:03,720 and harder and harder that you can't breathe. 641 00:37:04,280 --> 00:37:07,200 [Aditi] Dr. Rosenthal said "Well, you know her best chance is to have 642 00:37:07,280 --> 00:37:09,560 part of your lung because she is so small. 643 00:37:09,720 --> 00:37:11,120 Because you are the donor." 644 00:37:11,280 --> 00:37:15,480 [splutters] But he said Live Lobar Transplant in the UK is not ethical. 645 00:37:15,560 --> 00:37:17,960 So, an ethics committee would have to, you know 646 00:37:18,040 --> 00:37:21,280 sit and it would take a bit of time to determine that. 647 00:37:21,360 --> 00:37:24,720 And Aisha suddenly piped up and said, "But it's my birthday, it's Holi. 648 00:37:24,800 --> 00:37:26,600 I want to go back to India for Holi." 649 00:37:27,400 --> 00:37:28,920 Now life can be tough… 650 00:37:29,520 --> 00:37:31,680 when every single breath you take 651 00:37:32,280 --> 00:37:34,880 is a struggle… and… 652 00:37:35,040 --> 00:37:36,680 the slightest infection 653 00:37:37,040 --> 00:37:41,400 causes a serious, life-threatening exacerbation. 654 00:37:42,520 --> 00:37:45,200 I can either choose to be happy 655 00:37:45,480 --> 00:37:49,000 and try to smile through all of my difficult times… 656 00:37:49,560 --> 00:37:52,000 or I can choose to be miserable 657 00:37:52,400 --> 00:37:54,160 and get overwhelmed by it all. 658 00:37:55,360 --> 00:37:57,720 Now it's not that by being miserable, 659 00:37:58,040 --> 00:37:59,680 I am going to get any better. 660 00:38:00,440 --> 00:38:03,240 So, I may as well choose to be happy. 661 00:38:05,080 --> 00:38:08,280 And if I have to have pulmonary fibrosis… 662 00:38:09,120 --> 00:38:13,280 I choose to have a happy pulmonary fibrosis. 663 00:38:13,640 --> 00:38:17,640 So, happiness is clearly a choice one can make. 664 00:38:17,880 --> 00:38:20,640 No matter what, no matter where, 665 00:38:21,080 --> 00:38:23,560 you can find it if you look for it. 666 00:38:23,640 --> 00:38:26,000 [girl] ♪ It's Holi ♪ 667 00:38:26,240 --> 00:38:28,040 [guitar music] 668 00:38:28,120 --> 00:38:29,880 ♪ Happy Holi ♪ 669 00:38:33,560 --> 00:38:35,520 ♪ Fuck Holi ♪ 670 00:38:38,440 --> 00:38:43,520 ♪ All I want is bhang ♪ 671 00:38:44,760 --> 00:38:47,520 ♪ Let's get wasted ♪ 672 00:38:48,440 --> 00:38:51,320 ♪ Let's get fucked up ♪ 673 00:38:52,160 --> 00:38:54,960 ♪ So fucked up ♪ 674 00:38:55,400 --> 00:38:57,120 ♪ Whoa-oh! ♪ 675 00:38:57,200 --> 00:38:58,480 ♪ Oh! ♪ 676 00:39:00,120 --> 00:39:01,920 ♪ Fuck, yeah! ♪ 677 00:39:03,120 --> 00:39:04,400 [song fades out] 678 00:39:04,680 --> 00:39:08,080 [Aditi] After that, we actually reduced her time at school. 679 00:39:08,160 --> 00:39:12,440 She was then going to school only half time post that diagnosis. 680 00:39:12,520 --> 00:39:14,240 -[scribbling] -[ECG machine beeps] 681 00:39:14,800 --> 00:39:18,760 [Aditi] She was not able to do much physical activity after that. 682 00:39:18,840 --> 00:39:20,280 She would not run. 683 00:39:20,480 --> 00:39:22,160 She would walk everywhere. 684 00:39:22,560 --> 00:39:24,800 She was breathing about 685 00:39:25,080 --> 00:39:27,480 28 times a minute. 686 00:39:27,600 --> 00:39:29,360 And the normal breathing rate 687 00:39:29,440 --> 00:39:33,360 for her would be around 16 to 18 to 20. 688 00:39:33,440 --> 00:39:35,960 She was, uh, prescribed 689 00:39:36,120 --> 00:39:38,080 one liter of oxygen a minute 690 00:39:38,160 --> 00:39:41,880 right from 2010 onwards, but she refused to use it. 691 00:39:41,960 --> 00:39:43,680 [eerie music] 692 00:39:52,880 --> 00:39:55,160 [Aisha] We went to Rishikesh on a school trip. 693 00:39:55,240 --> 00:39:57,440 -[woman] Hmm. -[Aisha] I just had a cold. 694 00:39:57,920 --> 00:40:01,920 And so, I was coughing in the middle of the night. 695 00:40:02,000 --> 00:40:03,640 My roommates, they were like 696 00:40:03,880 --> 00:40:06,360 "Ugh! Why are you coughing so much like… 697 00:40:06,440 --> 00:40:08,760 like, shut up, you know like--" 698 00:40:08,840 --> 00:40:12,040 And-- And I was-- I didn't know what to do like 699 00:40:12,120 --> 00:40:14,320 so, I ran in the middle of the night to the… 700 00:40:14,400 --> 00:40:16,560 -to my um… to my nurse -[woman] Hmm. 701 00:40:16,680 --> 00:40:19,680 and to her tent… and I was balled my eyes out. 702 00:40:19,760 --> 00:40:21,320 [slow piano music] 703 00:40:25,520 --> 00:40:27,520 [music intensifies] 704 00:40:36,440 --> 00:40:39,640 [Ishaan] I am not gonna name names, but kids could just be mean. 705 00:40:39,720 --> 00:40:42,040 She always was short 706 00:40:42,120 --> 00:40:45,120 and like her growth was stunted due to her illness, so 707 00:40:45,320 --> 00:40:47,040 one day she came and she was really upset 708 00:40:47,120 --> 00:40:50,440 because one girl who was her friend like 709 00:40:50,520 --> 00:40:53,520 got on her knees and was like "Oh, what's it like from down here?" 710 00:40:53,600 --> 00:40:55,000 and you know just kinda like… 711 00:40:55,320 --> 00:40:57,160 like take the mic out of her. 712 00:40:58,120 --> 00:40:59,400 [Ishaan] And she hated it. 713 00:40:59,480 --> 00:41:01,360 [eerie music intensifies] 714 00:41:08,080 --> 00:41:10,160 [all cheering and applauding] 715 00:41:14,400 --> 00:41:16,440 [all cheering and whooping] 716 00:41:17,880 --> 00:41:19,240 [eerie music] 717 00:41:27,160 --> 00:41:28,680 [sad piano music] 718 00:41:29,840 --> 00:41:32,320 [Aditi] Ishaan started his university in 2010. 719 00:41:32,400 --> 00:41:33,720 He went off to the US. 720 00:41:33,800 --> 00:41:35,920 [Niren] So, this is the room. Room F! 721 00:41:36,160 --> 00:41:37,440 And you can see… 722 00:41:38,400 --> 00:41:39,840 It's a luxury bed. 723 00:41:40,520 --> 00:41:41,560 [Ishaan] Kind of struggling. 724 00:41:42,560 --> 00:41:43,760 [slow piano music] 725 00:41:49,360 --> 00:41:52,480 [projector whirring] 726 00:41:53,960 --> 00:41:55,080 [camera shutter clicks] 727 00:41:57,880 --> 00:41:59,160 [camera shutter clicks] 728 00:42:01,920 --> 00:42:02,880 [dog whimpers] 729 00:42:05,120 --> 00:42:08,080 [Ishaan] We got Rolo shortly after she was um… 730 00:42:08,160 --> 00:42:10,640 diagnosed with the pulmonary fibrosis. 731 00:42:10,760 --> 00:42:13,000 It was a new life-- In her life, it's a lot of fun 732 00:42:13,080 --> 00:42:15,040 you know when you have a new puppy and then 733 00:42:15,120 --> 00:42:17,760 while she was at home and I think a little time I was away in college 734 00:42:17,840 --> 00:42:19,160 and stuff, she would uh… 735 00:42:19,240 --> 00:42:22,120 just kinda have them to chill with which 736 00:42:22,440 --> 00:42:24,320 which, you know made her really happy. 737 00:42:25,000 --> 00:42:26,040 [Rolo barks] 738 00:42:26,400 --> 00:42:28,320 -[Ishaan] Not now, please. -[Rolo barks] 739 00:42:28,960 --> 00:42:30,520 -[Rolo whines] -[Ishaan] Out. 740 00:42:32,000 --> 00:42:32,960 [Rolo whines] 741 00:42:40,840 --> 00:42:42,160 [Aisha] I feel that happiness 742 00:42:42,440 --> 00:42:45,320 is also doing what you truly love 743 00:42:45,640 --> 00:42:48,280 and for me, my love is for art. 744 00:42:48,840 --> 00:42:53,080 Simply because it allows me to express myself 745 00:42:53,400 --> 00:42:56,200 in such a beautiful and unique way. 746 00:42:56,760 --> 00:42:58,320 [Aisha] As I dip my brush, 747 00:42:58,600 --> 00:43:00,320 and the vibrant colors of paint… 748 00:43:00,920 --> 00:43:02,840 I can almost feel the paint 749 00:43:02,920 --> 00:43:06,080 being smeared on to the fabric of the canvas. 750 00:43:06,600 --> 00:43:09,480 I tend to forget all of my worries 751 00:43:09,640 --> 00:43:12,680 and the difficult situation that I am really in. 752 00:43:13,120 --> 00:43:15,640 It almost becomes, a whole other world 753 00:43:15,840 --> 00:43:17,400 where-where I can escape 754 00:43:17,760 --> 00:43:19,360 at least for a little while. 755 00:43:19,560 --> 00:43:20,760 [piano music] 756 00:43:22,760 --> 00:43:23,840 [clickety-clack of keyboard] 757 00:43:26,760 --> 00:43:28,760 [ECG machine beeps] 758 00:43:28,840 --> 00:43:33,080 [Aditi] In 2012, when we went to the US for a five-day visit 759 00:43:33,160 --> 00:43:35,200 to see Ishaan in his university. 760 00:43:35,400 --> 00:43:38,560 At that time I thought that she is very very interested 761 00:43:38,640 --> 00:43:40,600 in this boy because he came and picked her up 762 00:43:40,680 --> 00:43:43,120 and just took her to show her the university and stuff. 763 00:43:43,200 --> 00:43:44,160 And I thought that's interesting. 764 00:43:44,240 --> 00:43:46,600 I didn't know he was such a good friend of Ishaan's. 765 00:43:46,680 --> 00:43:47,480 [cell phone chimes] 766 00:43:48,440 --> 00:43:49,240 [cell phone chimes] 767 00:43:50,200 --> 00:43:51,000 [cell phone chimes] 768 00:43:51,960 --> 00:43:52,760 [cell phone chimes] 769 00:43:54,400 --> 00:43:57,720 [Ishaan] I had never seen Aisha be like smitten with anyone like that. 770 00:43:58,160 --> 00:43:59,120 [cell phone chimes] 771 00:44:00,200 --> 00:44:01,040 [cell phone chimes] 772 00:44:02,000 --> 00:44:05,800 He saw how cool and fun she is, so he was chatting with her a lot. 773 00:44:06,000 --> 00:44:07,280 And then, it kind of 774 00:44:07,360 --> 00:44:08,960 stretched a bit further than I thought 775 00:44:09,040 --> 00:44:10,360 because they stayed in touch. 776 00:44:10,440 --> 00:44:11,240 [cell phone chimes] 777 00:44:12,200 --> 00:44:13,040 [cell phone chimes] 778 00:44:13,120 --> 00:44:13,920 GOOD MORNING, FATTY 779 00:44:15,520 --> 00:44:16,520 [cell phone chimes] 780 00:44:17,720 --> 00:44:19,080 -[feel-good music] -[cell phone chimes] 781 00:44:20,040 --> 00:44:21,600 [cell phone chimes] 782 00:44:23,600 --> 00:44:24,640 [cell phone chimes] 783 00:44:26,000 --> 00:44:26,800 [cell phone chimes] 784 00:44:26,880 --> 00:44:30,640 [Niren] When she fell in love, she just absolutely blossomed, you know. 785 00:44:30,880 --> 00:44:32,880 She was so happy and she would just 786 00:44:33,280 --> 00:44:36,800 block out… her physical condition and 787 00:44:37,120 --> 00:44:40,240 not think too much ahead in the future. Not even a few months. 788 00:44:40,320 --> 00:44:43,240 She was just so alive in the moment and so joyous. 789 00:44:43,320 --> 00:44:44,240 [whispering] Hi! 790 00:44:45,200 --> 00:44:48,080 Okay, yeah! I've tried this like so many times. 791 00:44:49,520 --> 00:44:50,560 Um… 792 00:44:51,720 --> 00:44:53,080 yeah! 793 00:44:54,160 --> 00:44:56,280 I just gonna see if it works. 794 00:44:56,680 --> 00:44:58,240 And I'll post a longer one 795 00:44:59,000 --> 00:44:59,960 because… 796 00:45:00,400 --> 00:45:01,600 my mom's sleeping. 797 00:45:02,200 --> 00:45:03,200 It's awkward. 798 00:45:03,480 --> 00:45:04,960 [feel-good music] 799 00:45:06,200 --> 00:45:07,000 [cell phone chimes] 800 00:45:07,560 --> 00:45:08,400 [cell phone chimes] 801 00:45:08,920 --> 00:45:09,800 [cell phone chimes] 802 00:45:10,760 --> 00:45:11,800 [cell phone chimes] 803 00:45:12,480 --> 00:45:13,280 [cell phone chimes] 804 00:45:14,240 --> 00:45:15,040 [cell phone chimes] 805 00:45:16,000 --> 00:45:16,800 [cell phone chimes] 806 00:45:17,760 --> 00:45:18,560 [cell phone chimes] 807 00:45:19,760 --> 00:45:21,720 [Niren splutters] When there used to be a planned phone call 808 00:45:21,800 --> 00:45:24,080 with… with this guy, she would throw us out of the room. 809 00:45:25,120 --> 00:45:26,880 And say, "Don't come and don't disturb me. 810 00:45:26,960 --> 00:45:28,720 I am very busy for the next few hours." 811 00:45:29,400 --> 00:45:31,480 And she would chat with this person for you know 812 00:45:31,720 --> 00:45:34,560 quite a few hours and she'd be beaming from ear to ear. 813 00:45:34,640 --> 00:45:36,680 [feel-good music continues] 814 00:45:52,640 --> 00:45:54,640 -[feel-good music fades out] -[eerie music fades in] 815 00:45:55,160 --> 00:45:56,480 -[cell phone chimes] -[ECG machine beeps] 816 00:45:57,720 --> 00:45:58,680 [cell phone chimes] 817 00:46:00,400 --> 00:46:01,400 [cell phone chimes] 818 00:46:02,760 --> 00:46:03,920 [cell phone chimes] 819 00:46:05,320 --> 00:46:06,200 [cell phone chimes] 820 00:46:07,560 --> 00:46:08,360 [cell phone chimes] 821 00:46:08,960 --> 00:46:09,800 [cell phone chimes] 822 00:46:10,320 --> 00:46:12,440 [Aditi] Part of her lung fibrosis is 823 00:46:12,520 --> 00:46:14,520 that the lung becomes very sensitive 824 00:46:14,600 --> 00:46:16,280 to air and everything in the air. 825 00:46:16,360 --> 00:46:18,720 So, she had to be on an anti-allergen every day. 826 00:46:18,840 --> 00:46:22,800 And this anti-allergen was pretty strong and you know 827 00:46:22,880 --> 00:46:25,360 it was giving her a lot of social anxiety. 828 00:46:25,440 --> 00:46:28,280 Then, she was also getting very terrible nightmares. 829 00:46:28,880 --> 00:46:31,960 [elevator creaks] 830 00:46:32,640 --> 00:46:36,080 [elevator opens and shuts] 831 00:46:45,120 --> 00:46:48,640 [Niren] One of the things I really wanted to explore was the lung transplant 832 00:46:48,880 --> 00:46:50,120 because, for me… 833 00:46:50,960 --> 00:46:53,040 that was the only way 834 00:46:53,160 --> 00:46:55,560 that I would be able to extend her life 835 00:46:56,040 --> 00:46:57,480 by another five years 836 00:46:57,560 --> 00:46:59,480 and in those five years perhaps… 837 00:47:00,560 --> 00:47:02,800 you know some other medical 838 00:47:03,080 --> 00:47:05,000 advancement may have happened. 839 00:47:05,280 --> 00:47:07,840 I always knew that I would not be party to it. 840 00:47:07,920 --> 00:47:09,800 I would not be able to party to it 841 00:47:09,880 --> 00:47:12,120 because for me, it is a huge ethical dilemma. 842 00:47:12,200 --> 00:47:14,000 It can reduce Niren's life. 843 00:47:14,120 --> 00:47:16,640 [splutters] You know, depends. He… the… 844 00:47:17,200 --> 00:47:18,400 I-I just-- 845 00:47:18,480 --> 00:47:21,600 For me it's very difficult to uh… to uh… 846 00:47:22,600 --> 00:47:25,640 uh… condone something like this. I-I just can't. 847 00:47:25,720 --> 00:47:28,800 It just seemed like way too invasive for… 848 00:47:29,480 --> 00:47:31,920 for the odds and… and what it would have really given to-- 849 00:47:32,000 --> 00:47:33,320 It wouldn't have even given that much. 850 00:47:33,400 --> 00:47:35,120 Because what… what's even living 851 00:47:35,200 --> 00:47:37,160 if it's just so miserable and you can't do anything! 852 00:47:37,240 --> 00:47:38,960 -[eerie music] -[ECG machine beeps] 853 00:47:39,040 --> 00:47:40,240 [cell phone chimes] 854 00:47:42,280 --> 00:47:43,320 [cell phone chimes] 855 00:47:45,280 --> 00:47:46,120 [cell phone chimes] 856 00:47:46,560 --> 00:47:49,560 [Aditi] I felt, she should make this decision for her life 857 00:47:49,640 --> 00:47:51,680 whether she wanted a lung transplant. 858 00:47:51,760 --> 00:47:54,960 And I was okay with her having a lung transplant from another donor 859 00:47:55,040 --> 00:47:56,880 but I had huge reservations. 860 00:47:57,120 --> 00:47:57,920 [cell phone chimes] 861 00:47:58,880 --> 00:47:59,800 [cell phone chimes] 862 00:48:00,760 --> 00:48:01,760 [cell phone chimes] 863 00:48:06,440 --> 00:48:10,160 [coughs] 864 00:48:11,920 --> 00:48:15,600 [Aditi] It was in 2014… 865 00:48:16,480 --> 00:48:18,800 that the number of breaths that she took 866 00:48:18,880 --> 00:48:22,160 became 44, at rest. 867 00:48:22,640 --> 00:48:25,880 If she had a coughing fit now, she would sweat profusely. 868 00:48:26,000 --> 00:48:29,080 She would-- Her body would really be under a lot of stress. 869 00:48:29,200 --> 00:48:31,240 [coughs] 870 00:48:39,640 --> 00:48:40,640 [ECG machine beeps] 871 00:48:45,480 --> 00:48:47,360 [Aisha] Although I have this disease, 872 00:48:47,880 --> 00:48:51,000 I am still grateful that I can walk around 873 00:48:51,080 --> 00:48:53,040 and do what I love to do. 874 00:48:53,280 --> 00:48:55,520 And I am even more determined 875 00:48:55,800 --> 00:48:57,160 to make the most 876 00:48:57,520 --> 00:49:01,720 of this wonderful gift of life that God has given me. 877 00:49:02,400 --> 00:49:07,160 Of course, there are days when I feel extremely down. 878 00:49:08,040 --> 00:49:09,600 Where I feel like simply 879 00:49:09,680 --> 00:49:11,400 curling up into a ball 880 00:49:11,640 --> 00:49:13,040 and just giving up! 881 00:49:13,960 --> 00:49:15,840 But then the realization 882 00:49:15,920 --> 00:49:17,760 that things could always 883 00:49:18,080 --> 00:49:19,840 be much much worse 884 00:49:20,040 --> 00:49:23,320 always pushes me to get back up on my feet 885 00:49:23,560 --> 00:49:25,200 and put a smile on my face. 886 00:49:25,480 --> 00:49:27,960 I accept who I am! 887 00:49:28,440 --> 00:49:30,480 I accept where I am at. 888 00:49:31,400 --> 00:49:33,240 And I accept the challenges 889 00:49:33,400 --> 00:49:35,200 that I am battling with today. 890 00:49:35,520 --> 00:49:37,120 As Anderson once said, 891 00:49:37,600 --> 00:49:42,160 "Enjoy life, there is plenty of time to be dead." 892 00:49:42,240 --> 00:49:43,280 [crowd applauds] 893 00:49:43,360 --> 00:49:44,280 Thank you. 894 00:49:44,760 --> 00:49:45,680 -[Aisha] Thank you. -[cell phone chimes] 895 00:49:46,640 --> 00:49:47,640 -[cell phone chimes] -[crowd applauds] 896 00:49:48,600 --> 00:49:49,400 [cell phone chimes] 897 00:49:49,840 --> 00:49:51,680 [cell phone chimes] 898 00:49:51,760 --> 00:49:54,280 [Aditi] In February of 2014, 899 00:49:54,360 --> 00:49:57,200 Aisha had just finished giving her happiness talk 900 00:49:57,280 --> 00:49:59,640 at the shift conference and uh… 901 00:49:59,960 --> 00:50:01,920 when I took her to the bathroom to brush her teeth 902 00:50:02,000 --> 00:50:04,480 she collapsed and said, "I can't breathe." 903 00:50:04,560 --> 00:50:06,920 And I kept-- I increased the oxygen 904 00:50:07,000 --> 00:50:09,480 right to the maximum that we had 905 00:50:09,640 --> 00:50:12,440 on her machine and she still couldn't breathe. 906 00:50:12,680 --> 00:50:14,760 [Aditi] And so we had to rush her to hospital. 907 00:50:15,080 --> 00:50:18,600 And they did a lot of tests, but when I sent them to the US 908 00:50:18,680 --> 00:50:21,080 they didn't agree that… her heart was alright. 909 00:50:21,160 --> 00:50:23,760 They felt her heart had definitely now gotten involved. 910 00:50:23,840 --> 00:50:26,800 -[wind blowing] -[soft music] 911 00:50:26,960 --> 00:50:28,520 [Aditi] Her heart was so bad 912 00:50:28,640 --> 00:50:32,840 that she could not even sit with her feet dangling on the bed. 913 00:50:33,240 --> 00:50:34,880 Her feet had to be elevated. 914 00:50:34,960 --> 00:50:37,960 And uh, if she sat up in bed, her heart used to flutter 915 00:50:38,040 --> 00:50:40,480 so badly that she just had to lie back. 916 00:50:42,080 --> 00:50:43,240 In a position like that, 917 00:50:43,320 --> 00:50:45,600 you're not really going to have 918 00:50:45,680 --> 00:50:47,120 any quality of life. 919 00:50:47,200 --> 00:50:50,200 You're not going to be able to move, your muscles are going to go. 920 00:50:58,160 --> 00:51:00,120 [Aditi] So, I took the mic-key button out. 921 00:51:00,840 --> 00:51:03,400 And uh… guess what! 922 00:51:03,920 --> 00:51:06,120 Her heart stabilized. 923 00:51:06,200 --> 00:51:08,000 [Aditi] She was able to sit up. 924 00:51:08,280 --> 00:51:11,080 She was able to dangle her legs off the bed. 925 00:51:11,560 --> 00:51:14,800 She was… able to go back to swimming even. 926 00:51:20,240 --> 00:51:21,400 -[cell phone chimes] -[pleasant music] 927 00:51:22,520 --> 00:51:23,440 [cell phone chimes] 928 00:51:26,880 --> 00:51:28,200 [Aditi] Amazing! 929 00:51:28,280 --> 00:51:29,160 [cell phone chimes] 930 00:51:31,200 --> 00:51:32,040 [cell phone chimes] 931 00:51:33,600 --> 00:51:34,640 [cell phone chimes] 932 00:51:36,400 --> 00:51:37,240 [cell phone chimes] 933 00:51:39,000 --> 00:51:39,880 [cell phone chimes] 934 00:51:40,840 --> 00:51:41,680 [cell phone chimes] 935 00:51:51,560 --> 00:51:53,800 [Aditi] And Aisha and I used to have 936 00:51:54,320 --> 00:51:56,760 a lot of discussions about 937 00:51:56,920 --> 00:51:58,200 sleeping with people. 938 00:51:58,280 --> 00:52:00,080 [pleasant music] 939 00:52:05,880 --> 00:52:09,800 And she would tell me, "How can you be that close to somebody, you know." 940 00:52:09,880 --> 00:52:12,720 [inhales deeply] Don't your armpits smell? [laughs] 941 00:52:12,800 --> 00:52:13,720 [clickety-clack of keyboard] 942 00:52:20,920 --> 00:52:22,920 "COME, LET US FIND HIM." 943 00:52:26,360 --> 00:52:29,080 [slow music kicks in] 944 00:52:53,000 --> 00:52:54,520 [slow music continues] 945 00:52:58,800 --> 00:53:01,240 [woman announcer] I would like to call up Aisha Chaudhary 946 00:53:01,320 --> 00:53:03,080 -to receive her certificate of attendance -[crowd applauds] 947 00:53:03,160 --> 00:53:05,200 from the American Embassy School. 948 00:53:05,280 --> 00:53:07,640 [crowd applauds] 949 00:53:10,840 --> 00:53:13,280 [Aditi] She got a certificate of attendance. 950 00:53:13,640 --> 00:53:15,040 She did not get a diploma. 951 00:53:15,120 --> 00:53:18,080 It looked exactly the same and they were so wonderful. 952 00:53:18,160 --> 00:53:20,040 They made it, copied it exact. [soft chuckle] 953 00:53:20,120 --> 00:53:22,200 [soft music] 954 00:53:24,240 --> 00:53:26,120 [Aditi] He decided to surprise her 955 00:53:26,200 --> 00:53:28,320 for her graduation from school. 956 00:53:28,840 --> 00:53:31,360 And so since this boy came down to Delhi, 957 00:53:31,520 --> 00:53:33,520 she decided to give him the card. 958 00:53:33,600 --> 00:53:34,920 [pleasant music] 959 00:53:49,640 --> 00:53:51,960 [Ishaan] It was hard for me to read that. 960 00:53:52,040 --> 00:53:54,440 That was the first time I directly had been 961 00:53:54,520 --> 00:53:58,680 able to hear, like see her feelings you know, and it was so direct 962 00:53:58,760 --> 00:54:00,640 and beautifully innocent 963 00:54:00,720 --> 00:54:02,600 and she wasn't asking for anything… 964 00:54:02,800 --> 00:54:04,400 at all, she was just… 965 00:54:04,800 --> 00:54:06,880 wanted to say how she felt, you know. 966 00:54:07,360 --> 00:54:08,600 [feel-good music] 967 00:54:17,280 --> 00:54:19,520 [Niren] I think once she realized that she was… 968 00:54:20,400 --> 00:54:22,320 feeling so much emotion, 969 00:54:22,440 --> 00:54:24,120 she wanted that to be reciprocated. 970 00:54:24,200 --> 00:54:26,640 She wanted to have an honest conversation about it. 971 00:54:27,320 --> 00:54:28,960 [feel-good music continues] 972 00:55:05,440 --> 00:55:08,600 [Aditi] Aisha was once a part of a bridal shower 973 00:55:08,680 --> 00:55:10,120 where she was picked 974 00:55:10,200 --> 00:55:13,160 to be dressed as the bride in toilet paper. 975 00:55:14,000 --> 00:55:15,280 And uh… 976 00:55:15,640 --> 00:55:17,560 she won that afternoon. 977 00:55:20,200 --> 00:55:22,280 I remember not discussing it with her. 978 00:55:22,440 --> 00:55:25,160 But I remember just… her 979 00:55:25,760 --> 00:55:29,520 holding me and we hugged each other for a very very long time 980 00:55:29,920 --> 00:55:30,880 that evening. 981 00:55:31,520 --> 00:55:34,080 Um… looking at the photographs, you know… 982 00:55:34,800 --> 00:55:37,080 she knew that she may never get married. 983 00:55:37,160 --> 00:55:38,560 And attending that wedding 984 00:55:38,640 --> 00:55:42,440 really brought that you know… uh… 985 00:55:43,560 --> 00:55:45,720 brought all that to the surface. 986 00:55:46,000 --> 00:55:47,520 But we never really discussed it. 987 00:55:48,120 --> 00:55:50,600 [poignant music] 988 00:55:54,800 --> 00:55:56,120 [clickety-clack of keyboard] 989 00:56:02,120 --> 00:56:06,360 [Aditi] He had a wedding in his family and I remember he did not reply to her 990 00:56:06,440 --> 00:56:09,040 and uh… she was so hopping mad. 991 00:56:09,120 --> 00:56:12,280 For two months, she was like, "Oh, my God! Has he read it? 992 00:56:12,640 --> 00:56:13,920 Has he lost it? 993 00:56:14,000 --> 00:56:16,240 Does he even have the letter? Did he even read it? 994 00:56:16,320 --> 00:56:18,320 Or did it get lost somewhere in the travels? 995 00:56:18,400 --> 00:56:20,000 Why isn't he saying anything?" 996 00:56:20,080 --> 00:56:21,600 [sad music] 997 00:56:24,040 --> 00:56:25,080 [cell phone chimes] 998 00:56:29,280 --> 00:56:30,320 [cell phone chimes] 999 00:56:31,760 --> 00:56:33,240 [cell phone chimes] 1000 00:56:39,040 --> 00:56:40,320 [cell phone chimes] 1001 00:56:49,960 --> 00:56:50,960 [cell phone chimes] 1002 00:56:54,080 --> 00:56:55,480 -[cell phone chimes] -[sad music continues] 1003 00:57:26,880 --> 00:57:29,440 [Niren] She went on this emotional roller coaster of 1004 00:57:29,920 --> 00:57:32,160 the highs of being in love 1005 00:57:32,360 --> 00:57:34,920 and then expressing herself. 1006 00:57:35,120 --> 00:57:37,560 And then, somewhat feeling abandoned because 1007 00:57:38,440 --> 00:57:40,120 you know this kid didn't really know 1008 00:57:41,280 --> 00:57:42,320 how to deal with it. 1009 00:57:42,560 --> 00:57:44,040 [clickety-clack of keyboard] 1010 00:58:03,040 --> 00:58:03,840 [cursor clicks] 1011 00:58:19,120 --> 00:58:20,200 [Niren] But you know somewhere it is-- 1012 00:58:20,960 --> 00:58:24,480 I feel happy that she experienced the joy of being in love. 1013 00:58:24,920 --> 00:58:27,360 Such a wonderful part of being alive. 1014 00:58:27,600 --> 00:58:28,600 [slow music] 1015 00:58:35,880 --> 00:58:41,160 [Aditi] And then in 2014, as her health declined more and more and more 1016 00:58:41,240 --> 00:58:44,080 and her coughing fits were becoming worse and worse. 1017 00:58:44,160 --> 00:58:45,560 She was doing less and less. 1018 00:58:45,640 --> 00:58:48,360 [Aditi] She didn't even have the energy to 1019 00:58:48,440 --> 00:58:50,760 [inhales deeply] hold the canvas to paint. 1020 00:58:50,840 --> 00:58:52,320 She could no longer paint. 1021 00:58:54,840 --> 00:58:58,360 [Niren] Aisha would also get quite annoyed when she felt 1022 00:58:58,800 --> 00:59:01,400 the unsaid expectation from people around her 1023 00:59:01,600 --> 00:59:03,360 that you know, "How can you be 1024 00:59:03,840 --> 00:59:06,200 upset today or how can you be sad 1025 00:59:06,320 --> 00:59:07,960 with what's happened to you, I mean… 1026 00:59:08,440 --> 00:59:11,040 given the fact that, you know, you talk about happiness." 1027 00:59:11,440 --> 00:59:12,960 And she would very often 1028 00:59:13,040 --> 00:59:14,920 say to me, "You know these talks… 1029 00:59:15,600 --> 00:59:18,160 you know, they just talk about one aspect of life 1030 00:59:18,400 --> 00:59:21,760 which is you know just happiness and everything is good and…" 1031 00:59:22,120 --> 00:59:25,400 She then started to just jot down her thoughts. 1032 00:59:25,480 --> 00:59:27,240 [clickety-clack of keyboard] 1033 00:59:33,960 --> 00:59:35,880 [Aditi] And uh, when she showed it to me… 1034 00:59:36,280 --> 00:59:37,920 I think she had about 1035 00:59:38,120 --> 00:59:40,920 uh… 30… 30 quotes. 1036 00:59:41,640 --> 00:59:43,840 And she called them her epiphanies. 1037 00:59:49,080 --> 00:59:51,400 [Ishaan] Me and her had a Google word doc… 1038 00:59:51,480 --> 00:59:53,560 that I would look at while I was at work. 1039 00:59:54,080 --> 00:59:55,240 Um and I would check out 1040 00:59:55,320 --> 00:59:58,200 you know what she has been writing and just would comment on them and-- 1041 00:59:58,360 --> 00:59:59,920 It was really crazy for me to-- 1042 01:00:00,000 --> 01:00:02,560 It was the first like deep inside I had into 1043 01:00:02,880 --> 01:00:04,160 how she is thinking it. 1044 01:00:04,240 --> 01:00:06,800 [slow music] 1045 01:00:34,720 --> 01:00:37,440 [Aditi] It's really hard when you are losing one thing 1046 01:00:37,520 --> 01:00:40,560 after another, after another, and the loses are just piling up. 1047 01:00:40,640 --> 01:00:42,320 You know, so from not being able to walk 1048 01:00:42,400 --> 01:00:44,920 she went to not being able to get out of bed 1049 01:00:45,000 --> 01:00:47,800 to even have a bath or have somebody bathe her. 1050 01:00:48,040 --> 01:00:50,320 That's how little breath she had left in her. 1051 01:00:50,400 --> 01:00:51,840 [clickety-clack of keyboard] 1052 01:00:55,120 --> 01:00:57,200 [soft music] 1053 01:01:03,080 --> 01:01:05,280 [eerie music fades in] 1054 01:01:10,200 --> 01:01:12,360 [bubbling] 1055 01:01:17,280 --> 01:01:18,280 [cell phone chimes] 1056 01:01:19,240 --> 01:01:20,160 [cell phone chimes] 1057 01:01:21,840 --> 01:01:22,720 [cell phone chimes] 1058 01:01:25,280 --> 01:01:27,760 and he was like, "Mom is not… not doing good. 1059 01:01:27,840 --> 01:01:29,640 She's been acting really crazy and 1060 01:01:29,720 --> 01:01:32,040 she's locked herself in a room and she won't come out. 1061 01:01:32,120 --> 01:01:33,280 Like, can you speak to her?" 1062 01:01:33,360 --> 01:01:36,400 So, when I spoke to her though, she was just like… 1063 01:01:37,040 --> 01:01:38,520 jabbering about some stuff 1064 01:01:38,600 --> 01:01:42,600 and I was getting really upset 'cause I had never heard her like that. 1065 01:01:42,960 --> 01:01:44,400 It was really scary 1066 01:01:44,480 --> 01:01:47,960 to hear your mum just like comp… like off the rail. 1067 01:01:48,040 --> 01:01:49,840 I had to force her along with her brother… 1068 01:01:51,000 --> 01:01:52,560 uh, to take her to the hospital. 1069 01:01:52,640 --> 01:01:56,920 In the car… she started speaking in the voice of a little girl. 1070 01:01:57,440 --> 01:02:00,640 That really completely froke me out. 1071 01:02:01,600 --> 01:02:03,560 And she said that her name was Aisha. 1072 01:02:04,000 --> 01:02:05,480 And she said she is gonna die. 1073 01:02:05,760 --> 01:02:08,080 [spooky music] 1074 01:02:11,480 --> 01:02:13,560 [Niren] Her brother, fortunately who was there 1075 01:02:13,640 --> 01:02:15,480 and her sister-in-law. 1076 01:02:16,120 --> 01:02:19,040 So I told them, "You please look after her, I have to go back to Aisha." 1077 01:02:19,720 --> 01:02:22,720 And I was paranoid. I didn't want anything to happen to Aisha. 1078 01:02:23,360 --> 01:02:26,000 Because what if Aisha dies in the next three days? 1079 01:02:26,560 --> 01:02:28,520 And Aditi comes and there's no Aisha! 1080 01:02:29,280 --> 01:02:31,360 I mean, she will then you know permanently… 1081 01:02:32,400 --> 01:02:33,400 lose it. 1082 01:02:34,680 --> 01:02:35,520 [cell phone chimes] 1083 01:02:36,480 --> 01:02:37,280 [cell phone chimes] 1084 01:02:38,240 --> 01:02:39,120 [cell phone chimes] 1085 01:02:42,280 --> 01:02:43,360 [cell phone chimes] 1086 01:02:45,680 --> 01:02:46,880 [cell phone chimes] 1087 01:02:48,680 --> 01:02:51,280 [Niren] She had this incredible sense of humor, Aisha! 1088 01:02:52,240 --> 01:02:54,400 So, she said to me, "What's happened to Mum?" 1089 01:02:54,680 --> 01:02:55,800 [rhythematic whistle] 1090 01:02:56,480 --> 01:02:57,720 Has she gone cuckoo?" 1091 01:02:58,120 --> 01:03:00,800 She said to me. [laughs] 1092 01:03:02,760 --> 01:03:04,440 I said, "Yeah, Aisha, she hasn't slept." 1093 01:03:05,200 --> 01:03:06,440 And she rolled her eyes. 1094 01:03:06,520 --> 01:03:08,080 "She is a drama queen!" 1095 01:03:08,480 --> 01:03:09,680 [pleasant music] 1096 01:03:28,840 --> 01:03:30,440 [Niren] And even when after Aditi came back, 1097 01:03:30,520 --> 01:03:32,640 she was like a zombie for like two weeks. 1098 01:03:32,720 --> 01:03:35,280 She was so drugged out. She had no idea. 1099 01:03:35,640 --> 01:03:37,200 I think for another couple of days, she didn't… 1100 01:03:38,200 --> 01:03:39,880 talk or reach out to Aisha 1101 01:03:40,200 --> 01:03:41,480 which was unthinkable. 1102 01:03:43,800 --> 01:03:45,200 And I think that must have really… 1103 01:03:46,200 --> 01:03:47,640 rattled Aisha as well. 1104 01:03:47,720 --> 01:03:49,280 [poignant music] 1105 01:03:56,720 --> 01:04:01,200 The fear was growing because now the last medication left really was morphine 1106 01:04:01,280 --> 01:04:03,720 because when a child has uh… 1107 01:04:04,080 --> 01:04:06,080 uh… has lung fibrosis 1108 01:04:06,160 --> 01:04:08,520 um… they can feel a lot of suffocation. 1109 01:04:09,080 --> 01:04:11,440 [heart thumping] 1110 01:04:11,800 --> 01:04:13,320 [Aditi] I told her about the morphine. 1111 01:04:13,400 --> 01:04:15,000 I told her that we are going to be starting it. 1112 01:04:15,080 --> 01:04:17,520 And I remember she said, "So, what does that mean?" 1113 01:04:18,400 --> 01:04:21,280 And I was just quiet. I said, "It will help you, Aish." 1114 01:04:21,640 --> 01:04:23,560 And she just said, "How?" 1115 01:04:24,000 --> 01:04:25,160 And then she said… 1116 01:04:26,960 --> 01:04:29,040 [eerie music] 1117 01:04:35,880 --> 01:04:36,840 [clickety-clack of keyboard] 1118 01:04:42,880 --> 01:04:44,800 [Niren] So now, the book was, the project was on 1119 01:04:44,880 --> 01:04:47,720 and I felt that because she had that to look forward to… 1120 01:04:48,040 --> 01:04:49,920 that she would not give up very quickly. 1121 01:04:50,440 --> 01:04:53,440 And in some ways, I didn't want it to end. 1122 01:04:53,680 --> 01:04:55,680 -[feel-good music] -[camera shutter clicks] 1123 01:05:00,320 --> 01:05:01,600 [camera shutter clicks] 1124 01:05:01,840 --> 01:05:04,680 [Aditi] I remember when, you know, they were editing uh… 1125 01:05:05,040 --> 01:05:06,280 the book, 1126 01:05:06,400 --> 01:05:09,800 she would fight over every full stop, every comma! 1127 01:05:09,880 --> 01:05:11,200 She didn't want… 1128 01:05:11,280 --> 01:05:13,800 you know, the profanity that's mentioned in the book-- 1129 01:05:13,960 --> 01:05:15,880 She didn't want that removed. 1130 01:05:15,960 --> 01:05:19,120 [Niren] And she said, "And I don't want anyone to have anything to say 1131 01:05:19,280 --> 01:05:22,080 about how my book will be designed or how it will look. 1132 01:05:22,600 --> 01:05:24,160 I want to have the final word." 1133 01:05:24,920 --> 01:05:27,160 [feel-good music continues] 1134 01:06:20,320 --> 01:06:22,040 [Niren] Aditi and I were taking turns 1135 01:06:22,320 --> 01:06:24,560 to sleep with her because she did not want to be alone. 1136 01:06:24,640 --> 01:06:25,960 So, this night I was sleeping with her 1137 01:06:26,040 --> 01:06:28,960 and giving Aditi a break so she could… she could uh… 1138 01:06:29,160 --> 01:06:30,240 be in her room. 1139 01:06:30,400 --> 01:06:31,840 And I think at six in the morning, 1140 01:06:32,120 --> 01:06:34,440 Jeet called me from the kitchen. 1141 01:06:35,120 --> 01:06:37,720 And he said, "Something has happened to Rolo." 1142 01:06:38,240 --> 01:06:39,920 So, I run out of the room and he is dead. 1143 01:06:41,000 --> 01:06:43,040 Rolo has just… passed out. 1144 01:06:43,120 --> 01:06:45,560 I-I touch him and there's no heartbeat. There's nothing. 1145 01:06:45,720 --> 01:06:47,600 [sad music] 1146 01:06:50,600 --> 01:06:53,720 [Aditi] We didn't… we were not expecting him to die. He was only three years old. 1147 01:06:53,800 --> 01:06:55,680 [Aditi inhales deeply] And uh… 1148 01:06:57,480 --> 01:07:00,200 I thought it was important for her to see him… 1149 01:07:00,800 --> 01:07:02,120 one last time. 1150 01:07:02,600 --> 01:07:05,400 And I am not sure if that was the right decision but… 1151 01:07:05,760 --> 01:07:09,480 she was freaking out because he had been dead since 8:30 in the morning 1152 01:07:09,720 --> 01:07:11,640 and uh… we broke the news to her 1153 01:07:11,720 --> 01:07:14,360 when she woke up at about 12:30 in the afternoon. 1154 01:07:14,440 --> 01:07:15,640 [clickety-clack of keyboard] 1155 01:07:27,360 --> 01:07:31,600 [Niren] I can't forget the piercing scream that she let out and this is… 1156 01:07:32,000 --> 01:07:33,240 from Aisha who couldn't-- 1157 01:07:33,360 --> 01:07:34,640 She was not able to breathe 1158 01:07:34,720 --> 01:07:37,680 and she used to say you know, "I feel so bad I can't even cry. 1159 01:07:38,200 --> 01:07:40,720 I don't have the lung capacity to even cry." 1160 01:07:41,000 --> 01:07:42,600 And she screamed 1161 01:07:42,800 --> 01:07:45,720 which meant, you can imagine the kind of effort that it took. 1162 01:07:46,640 --> 01:07:48,560 I rush into her room and she was 1163 01:07:48,720 --> 01:07:50,400 thrashing about and she was 1164 01:07:50,480 --> 01:07:52,760 so so so upset! 1165 01:07:53,000 --> 01:07:55,840 [inhales deeply] And she started screaming and… and… 1166 01:07:55,920 --> 01:07:58,320 at God and she said, "You know, what do you want from me? 1167 01:07:58,400 --> 01:08:01,200 You know, you have taken everything I had, now you've taken Rolo." 1168 01:08:01,280 --> 01:08:03,560 [piercing music] 1169 01:08:10,000 --> 01:08:13,040 [Aditi] Niren hurriedly then took him away and uh… 1170 01:08:13,520 --> 01:08:15,480 to this place called, "Paws in Heaven." 1171 01:08:15,680 --> 01:08:18,200 And they normally burn the… burn the body 1172 01:08:18,279 --> 01:08:20,880 and they bury the ashes with the name. 1173 01:08:21,359 --> 01:08:25,160 She said… "I can't imagine that you burnt him into thin air." 1174 01:08:28,640 --> 01:08:31,760 [Aditi] That was the day I realized that we cannot cremate her. 1175 01:08:32,120 --> 01:08:34,080 We… we should bury her. 1176 01:08:34,399 --> 01:08:36,640 You know because I buried Tanya because of my faith. 1177 01:08:36,840 --> 01:08:38,040 But uh… [voice trembles] 1178 01:08:38,520 --> 01:08:40,479 she would have preferred to be buried. 1179 01:08:40,560 --> 01:08:42,319 [Ishaan] It was like a mother losing a child, 1180 01:08:42,399 --> 01:08:45,200 like that's how upset she was. Um… 1181 01:08:45,560 --> 01:08:49,200 and I think a part of it was also her grieving her own death. 1182 01:08:49,279 --> 01:08:51,240 -[scribbles] -[sad music] 1183 01:08:55,439 --> 01:08:59,000 [Aditi] She was just absolutely in pain. 1184 01:08:59,359 --> 01:09:02,800 It was so much emotional pain and physical pain 1185 01:09:02,880 --> 01:09:05,000 [quavers] because her body would not allow her to cry. 1186 01:09:05,479 --> 01:09:06,520 And I remember… 1187 01:09:06,760 --> 01:09:09,399 [quavers] increasing the oxygen and increasing the oxygen 1188 01:09:09,479 --> 01:09:10,800 and her saturation is falling. 1189 01:09:10,880 --> 01:09:13,399 And she was just screaming, screaming, and howling. [sobs] 1190 01:09:14,120 --> 01:09:16,399 [quavers] And she kept looking at me the whole time 1191 01:09:16,479 --> 01:09:18,160 and I knew what she was thinking. 1192 01:09:19,439 --> 01:09:22,279 [quavers] I knew she was thinking that this will be you, soon. 1193 01:09:22,359 --> 01:09:24,160 [ECG machine beeps] 1194 01:09:25,720 --> 01:09:27,920 I must confess… that 1195 01:09:28,600 --> 01:09:29,720 I did wonder… 1196 01:09:30,359 --> 01:09:32,040 if I was going to die… 1197 01:09:33,840 --> 01:09:35,720 and I would have sleepless nights 1198 01:09:36,359 --> 01:09:39,399 just thinking, tossing, and turning 1199 01:09:39,479 --> 01:09:42,120 with this idea that soon… 1200 01:09:42,760 --> 01:09:43,880 I may be gone. 1201 01:09:44,920 --> 01:09:46,560 And if that's going to happen… 1202 01:09:46,960 --> 01:09:48,279 [emphasizes] what's the point… 1203 01:09:48,800 --> 01:09:49,840 of anything? 1204 01:09:51,399 --> 01:09:53,479 I think about this for hours 1205 01:09:53,800 --> 01:09:54,960 and get nowhere. 1206 01:09:57,040 --> 01:09:58,600 But then it suddenly struck me… 1207 01:09:59,360 --> 01:10:02,560 that I am not really alone in all of this. 1208 01:10:03,280 --> 01:10:05,720 Is it not true that not just me… 1209 01:10:06,040 --> 01:10:08,280 all of us sitting in this room today 1210 01:10:08,920 --> 01:10:09,880 will be gone? 1211 01:10:10,400 --> 01:10:12,160 Just at different times. 1212 01:10:12,640 --> 01:10:15,400 Some sooner than the others. 1213 01:10:17,000 --> 01:10:20,320 So then, if death is the ultimate truth… 1214 01:10:21,760 --> 01:10:24,480 what should really matter most in life? 1215 01:10:25,280 --> 01:10:27,120 [gloomy music] 1216 01:10:35,280 --> 01:10:37,080 [gloomy music intensifies] 1217 01:10:45,440 --> 01:10:48,880 [Aditi] Aisha… only mentioned God 1218 01:10:48,960 --> 01:10:50,600 towards the very end of her life 1219 01:10:50,680 --> 01:10:54,040 where one day she said to me, "I am so angry with him. 1220 01:10:54,120 --> 01:10:57,000 I think he is like this big bird who just 1221 01:10:57,080 --> 01:11:00,200 hovers around and shits on me every now and again. 1222 01:11:00,440 --> 01:11:02,680 And he has taken so much from me. 1223 01:11:02,920 --> 01:11:04,680 And I am really mad with him." 1224 01:11:06,480 --> 01:11:08,480 [ECG machine beeps] 1225 01:11:13,840 --> 01:11:16,120 [Aditi] And she said, "I want to throw darts at him. 1226 01:11:17,120 --> 01:11:18,520 Just like he throws at me." 1227 01:11:19,160 --> 01:11:20,480 And I said, "You should!" 1228 01:11:21,040 --> 01:11:22,320 So, I said, "So… 1229 01:11:22,400 --> 01:11:25,080 whose picture do you think I should print out?" 1230 01:11:25,160 --> 01:11:28,040 And she said, "I want Jesus' photo there." 1231 01:11:28,760 --> 01:11:30,800 [eerie music] 1232 01:11:43,760 --> 01:11:45,520 -[clickety-clack of keyboard] -[wind blowing] 1233 01:11:52,720 --> 01:11:55,240 [pleasant music] 1234 01:11:58,680 --> 01:12:02,120 [Aditi] We had planned a book launch party for Aisha 1235 01:12:02,200 --> 01:12:04,520 on the 28th of January. 1236 01:12:04,600 --> 01:12:06,160 So, she got excited and said, 1237 01:12:06,240 --> 01:12:08,160 "I really want to get a dress 1238 01:12:08,280 --> 01:12:10,080 and I have spoken to this friend of mine 1239 01:12:10,160 --> 01:12:12,920 and she is coming and she is going to design a dress for me 1240 01:12:13,000 --> 01:12:14,840 to wear for my book launch." 1241 01:12:16,760 --> 01:12:18,680 -[excited] Hi! -[feel-good music] 1242 01:12:19,320 --> 01:12:21,440 [groans and giggles] 1243 01:12:23,640 --> 01:12:24,680 [Aisha] Hi! 1244 01:12:25,560 --> 01:12:27,760 Hi! Chips! 1245 01:12:28,360 --> 01:12:30,640 Hi! [gasps] Hi! 1246 01:12:30,840 --> 01:12:33,320 [Ishaan] I had flown back and I had decided to extend my trip. 1247 01:12:33,680 --> 01:12:35,880 And Mum was taking a lead on the party. 1248 01:12:36,080 --> 01:12:37,880 And there was a lot of hustle-bustle with that. 1249 01:12:37,960 --> 01:12:39,480 But Aisha was more concerned about 1250 01:12:39,560 --> 01:12:41,600 this interview that was about to happen. 1251 01:12:41,680 --> 01:12:44,560 Um… it was that last interview that she gave. 1252 01:12:45,360 --> 01:12:48,360 [woman] What is the message you want to give to the world? 1253 01:12:49,480 --> 01:12:54,280 Everyone's just fighting their own battles together and… 1254 01:12:55,000 --> 01:12:57,080 we are all on a roller coaster ride. 1255 01:12:57,480 --> 01:12:59,960 Writing this book has really 1256 01:13:00,240 --> 01:13:02,240 uplifted me and so 1257 01:13:02,560 --> 01:13:04,880 I wanted like my readers 1258 01:13:05,080 --> 01:13:06,840 to find peace 1259 01:13:07,080 --> 01:13:09,800 on whatever roller coaster ride 1260 01:13:09,880 --> 01:13:11,560 [quavers] they may be on, so… 1261 01:13:12,560 --> 01:13:14,760 I hope that's what will happen. 1262 01:13:14,840 --> 01:13:17,040 [wind blowing] 1263 01:13:20,640 --> 01:13:23,000 [clock ticking] 1264 01:13:25,440 --> 01:13:28,360 [Ishaan] We were up really late till like four or something… 1265 01:13:29,000 --> 01:13:31,200 [clicks tongue] and I went to bed and I woke up 1266 01:13:31,640 --> 01:13:32,880 uh, to Aisha coughing. 1267 01:13:32,960 --> 01:13:35,040 -[ECG machine beeps] -[clock ticking] 1268 01:13:40,160 --> 01:13:43,560 [Aditi] Santoshi, the maid, woke me up at 11. 1269 01:13:44,200 --> 01:13:46,760 And something in her voice told me that 1270 01:13:47,000 --> 01:13:48,920 this was really bad. 1271 01:13:49,480 --> 01:13:51,000 I rushed into the room 1272 01:13:51,160 --> 01:13:52,760 and I put my hands on her 1273 01:13:52,840 --> 01:13:54,560 to give her some touch healing and 1274 01:13:54,640 --> 01:13:56,960 started looking at all the monitors and 1275 01:13:57,040 --> 01:13:58,480 managing the oxygen… 1276 01:13:59,200 --> 01:14:00,440 and uh… 1277 01:14:01,040 --> 01:14:02,160 her cough… 1278 01:14:02,720 --> 01:14:04,880 was really really really bad. 1279 01:14:05,160 --> 01:14:07,520 I actually rang Niren's secretary and said, 1280 01:14:07,600 --> 01:14:09,520 "Send him home! Send him home now!" 1281 01:14:09,880 --> 01:14:13,600 She was like really breathing very heavily and she was you know really… 1282 01:14:14,200 --> 01:14:17,560 looking very uncomfortable and thrashing about. 1283 01:14:17,640 --> 01:14:20,080 And that's the time when she held onto my hand and she said, 1284 01:14:20,160 --> 01:14:22,920 "You know, I don't want to die. You know, save me." 1285 01:14:24,000 --> 01:14:26,640 And I said, "No, no, nothing will happen to you." 1286 01:14:27,160 --> 01:14:28,800 The pulmonologist came 1287 01:14:29,280 --> 01:14:32,760 [quavers] and she said, "It doesn't look good. You know what this means." 1288 01:14:32,840 --> 01:14:35,720 And she spoke to the critical care specialist. 1289 01:14:35,800 --> 01:14:37,360 And he said uh… 1290 01:14:38,040 --> 01:14:39,960 "No, we… we should not move her now 1291 01:14:40,040 --> 01:14:41,840 because just moving her can kill her. 1292 01:14:41,920 --> 01:14:43,600 So now, just leave her there." 1293 01:14:43,680 --> 01:14:47,000 And life had come a full circle. We had gone to the Kamats' 1294 01:14:47,840 --> 01:14:50,880 um… to save a life 18 years back. 1295 01:14:51,240 --> 01:14:53,280 And Rita heard in Aditi's voice 1296 01:14:53,360 --> 01:14:55,760 the previous night that she just… 1297 01:14:56,360 --> 01:14:58,960 felt instinctively that Aisha doesn't have long. 1298 01:14:59,040 --> 01:15:00,360 And she took a flight and she landed. 1299 01:15:00,440 --> 01:15:03,080 Rita was sitting at her feet giving her Jin Shin Jyutsu. 1300 01:15:03,160 --> 01:15:04,560 She didn't want to move from there. 1301 01:15:04,880 --> 01:15:07,440 Niren and Ishaan were on either side of her. 1302 01:15:07,800 --> 01:15:09,360 And I just left them to it. 1303 01:15:10,200 --> 01:15:11,760 [quavers] And I think part of me was 1304 01:15:11,840 --> 01:15:13,720 so scared that I was chicken! 1305 01:15:14,360 --> 01:15:16,960 I could not… I could not… 1306 01:15:18,240 --> 01:15:19,720 be with her at that time. 1307 01:15:20,120 --> 01:15:22,160 [quavers and sobs] I had to be there for her but not with her. 1308 01:15:22,240 --> 01:15:24,200 [gloomy music] 1309 01:15:31,400 --> 01:15:34,120 [Niren] The doorbell rings, I go there, open the door. 1310 01:15:34,640 --> 01:15:35,640 The book is there. 1311 01:15:36,040 --> 01:15:39,280 I run to Aisha's uh… bedside 1312 01:15:39,360 --> 01:15:41,720 and the book's title is you know like braille. 1313 01:15:41,800 --> 01:15:43,840 It's embossed, My Little Epiphanies 1314 01:15:43,920 --> 01:15:46,000 and I run her fingers on the… 1315 01:15:46,240 --> 01:15:48,000 on the title of the book and I said, "Aisha… 1316 01:15:48,760 --> 01:15:49,800 your book is here." 1317 01:15:50,440 --> 01:15:52,520 [gloomy music continues] 1318 01:15:56,800 --> 01:16:00,000 And she nodded faintly and she smiled. 1319 01:16:00,800 --> 01:16:01,960 We've run out of words. 1320 01:16:02,320 --> 01:16:03,520 There's nothing left to say. 1321 01:16:04,720 --> 01:16:06,120 And we're just holding each other. 1322 01:16:08,560 --> 01:16:11,320 And just… waiting. 1323 01:16:15,640 --> 01:16:17,360 [soft guitar music] 1324 01:16:19,080 --> 01:16:21,960 [Ishaan in a quavering voice] I told her like, "I love you so much and… 1325 01:16:22,040 --> 01:16:24,320 I may act like I am more hard and I don't… 1326 01:16:24,400 --> 01:16:25,720 I'm okay, but 1327 01:16:25,880 --> 01:16:28,080 I think about you every single day and… 1328 01:16:28,320 --> 01:16:30,520 like… you mean so much to me. 1329 01:16:35,200 --> 01:16:36,920 [Ishaan] She got up, 1330 01:16:37,000 --> 01:16:39,840 she took off her oxygen, she gave me a kiss like… 1331 01:16:41,200 --> 01:16:43,640 [gloomy music continues] 1332 01:16:47,240 --> 01:16:50,840 I did say to Aisha in the last year of life that 1333 01:16:51,280 --> 01:16:53,880 "Do you think that it was easier for Tanya? 1334 01:16:53,960 --> 01:16:56,640 That Tanya's life was in some way easier than yours. 1335 01:16:58,760 --> 01:17:00,600 She was actually very upset with me 1336 01:17:00,760 --> 01:17:02,840 and she said, "What kind of question is that? 1337 01:17:03,120 --> 01:17:04,560 Why would you ask me that?" 1338 01:17:05,000 --> 01:17:05,920 [sniffs] 1339 01:17:06,640 --> 01:17:08,360 It was very very selfish of me 1340 01:17:08,440 --> 01:17:11,480 because somewhere I think I wanted Aisha to absolve me. 1341 01:17:12,080 --> 01:17:14,760 Absolve me for having… had her 1342 01:17:15,000 --> 01:17:17,520 saved her life, taken her through transplant 1343 01:17:18,040 --> 01:17:20,360 only to give her all the pain of a fibrosis. 1344 01:17:20,440 --> 01:17:23,280 [quavers and sobs] Because somewhere I think if I didn't believe 1345 01:17:23,360 --> 01:17:24,880 "Thou shalt not kill" 1346 01:17:25,400 --> 01:17:28,000 then none of this would have been… have happened to her. 1347 01:17:29,480 --> 01:17:31,560 [sad music] 1348 01:17:48,560 --> 01:17:50,600 [interviewer] Do you plan to write another one? 1349 01:17:51,360 --> 01:17:53,640 Um, I am thinking maybe… 1350 01:17:54,160 --> 01:17:55,720 maybe a sequel… 1351 01:17:55,920 --> 01:17:57,560 of My Little Epiphanies… 1352 01:17:57,880 --> 01:18:01,120 because like my thoughts are never-ending… 1353 01:18:01,480 --> 01:18:02,920 so, um… 1354 01:18:03,960 --> 01:18:06,240 or… I am not sure. 1355 01:18:07,160 --> 01:18:08,760 Maybe, I don't know. [soft chuckle] 1356 01:18:08,840 --> 01:18:10,880 [gloomy music] 1357 01:18:21,200 --> 01:18:23,720 [wind blowing] 1358 01:18:39,640 --> 01:18:40,800 [sobs] 1359 01:18:42,080 --> 01:18:43,960 [birds chirping] 1360 01:18:46,960 --> 01:18:48,200 [Niren] I was once again 1361 01:18:48,440 --> 01:18:50,880 in the same graveyard where Tanya was buried. 1362 01:18:53,080 --> 01:18:55,920 And they said that now we do vertical graves, 1363 01:18:56,000 --> 01:18:57,200 one on top of the other 1364 01:18:57,480 --> 01:18:58,840 because we don't have room. 1365 01:19:02,320 --> 01:19:05,640 And which meant that, both my daughters will be in the same grave. 1366 01:19:08,720 --> 01:19:09,840 And that was just… 1367 01:19:11,080 --> 01:19:13,640 I mean just unbearable for me. 1368 01:19:14,080 --> 01:19:16,360 Some comfort that my daughters were together 1369 01:19:16,440 --> 01:19:17,920 but I think… 1370 01:19:18,800 --> 01:19:20,200 it was mostly grief. 1371 01:19:21,000 --> 01:19:22,480 [indistinct chatter] 1372 01:19:33,520 --> 01:19:35,440 [Aditi quavers] People stood in silence 1373 01:19:35,520 --> 01:19:38,320 for Aisha in Jaipur at the Lit Fest 1374 01:19:38,560 --> 01:19:41,640 at the very same time that we were burying her in the ground 1375 01:19:41,720 --> 01:19:43,120 in… in Delhi. 1376 01:19:43,360 --> 01:19:44,600 [poignant music] 1377 01:20:09,440 --> 01:20:11,480 [poignat music intensifies] 1378 01:20:26,760 --> 01:20:28,760 [poignant music intensifies] 1379 01:20:41,040 --> 01:20:43,840 [music fades out] 1380 01:20:45,320 --> 01:20:48,800 [pleasant music fades in]