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