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[feel-good music]
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-[feel-good music fades out] -[female vocalizes]
[suspenseful music]
[suspenseful music intensifies]
-[machine beeps] -[suspenseful music mellows]
[girl coughing]
[indistinct chatter]
[suspenseful music continues]
[woman] You okay?
-[scribbling] -[suspenseful music continues]
[breathing heavily]
[clickety-clack of keyboard]
[machine beeps]
[girl] I remember my earliest
memory was, uh, my third birthday.
[splutters] And I still remember the
dress I was wearing and the green flowers and
I was looking like chocolate cake and…
I remember being really normal.
I still watch videos today from my childhood.
-[child sneezes] -[woman] Aishu!
-Hello! -[man] I think we're gonna miss…
-[woman] What are you doing here? -[man] miss our train.
-[woman] No it's said just now, -[girl] I am playing
-fifteen minutes left. -with the snow. Whee!
-[woman] Whoo! -[Aisha] It's fun! Mum!
-Mummy, it's snowing! -[woman whooping]
[woman vocalizing]
I know!
-[camera shutter clicks] -[slow music]
[woman] Aisha just happened. [soft chuckles]
She was the desire of the universe.
Yeah, after having been through something as horrific as I went through with Tanya
[inhales deeply] we were not planning her.
We were not planning a baby.
I must have had the shortest
menstrual cycle of my life.
That's how Aisha was conceived.
[cheering]
Had it not been for my faith,
I think any other sensible person would have just aborted that child.
-[laughs teasingly] -[boy laughs]
[laughs aloud]
[intense music]
[intense music faints]
-[clickety-clack of keyboard] -[ECG machine beeps]
-[machine beeps] -[intense music]
[man] In Vellore…
Tanya had died and we had to take her to Chennai to bring her back to Delhi.
They put Tanya's body inside a plastic bag with ice cubes…
because they didn't want the body to decompose.
And I held her, uh, in my lap for those
hours [sighs] that seemed like, you know, uh… eternity.
And you know, her hair was getting matted, I still remember with that
the… as the ice cubes were melting inside and…
[Niren] And you have such conflicting emotions.
You feel like, "I hope she won't feel cold." [nervous chuckle]
[splutters] You know, just random thoughts.
"I hope she is not uncomfortable." And then you say, "No, but she is dead" and…
-it's just absolutely horrific. -[wind blowing]
-[clickety-clack of keyboard] -[ECG machine beeps]
[ECG machine flatline]
[Niren] For some reason because we were in missionary hospital where Tanya died,
Aditi somehow felt that Tanya has gone to Jesus.
And she wanted to therefore convert to Christianity.
And also have a burial for Tanya.
[woman] Had it not been… [inhales deeply]
for me studying the Bible, hearing, listening
uh, to Bible classes,
I just knew that God wanted me to have more children.
And it was-- Ishaan was a faith baby.
[machine beeps]
[girl] I used to be very close to my brother.
And we used to play games and
-play in the park and-- -[both giggling]
It was quite normal from what I remember. Hmm.
[swing squeaking]
-[boy] Here you go! -[girl screams]
[swing squeaking]
Ishaan was born, and we were happy, and that was the end of it
because we did not want to take the chance,
did not want a repeat of what happened to Tanya.
We thought it would be very very irresponsible.
My faith, you know, really says, "Thou shalt not kill."
There is no caveat in front of it.
There was no escaping it.
I could not kill that child.
[slow intense music]
[clouds rumbling]
[somber music]
[Aditi] Aisha was born with a white coating.
Her tongue was totally white.
And I used to tell the doctors, "Please test it."
Because one of Tanya's first symptoms was fungus in the mouth.
[Niren] It was again, she doesn't seem to recover from
colds and flus and minor illness in quite the same way that you know…
Tanya could not.
[Aisha] It was right after I was born,
all the problems happened.
So, we went to the UK.
And then, that's where I had the transplant and…
that's where…
everything advanced from--
-[clouds rumbling] -[airplane whirring]
[Niren] We were-- We didn't even have enough money to stay on our own.
We were staying with the Kamats, who are friends from college.
And were godsent, I think.
They were the most wonderful friends we could have had.
[Aditi] I remember our first appointment with
Great Ormond Street was 2nd of August, 1996.
And uh… she was diagnosed, I think, by the 10th of August.
And our worst fears were confirmed that Aisha indeed has…
Severe Combined Immune Deficiency.
[spooky music]
[Aditi] It's a one in a million chance
that two people will meet and
happen to carry the same recessive gene
because the truth is that all of us have
six to eight faulty genes.
We are all carrying them.
But it's only in meeting and marrying somebody with a…
common gene which happens…
The statistic is one in a million.
I knew that my daughter has a terminal illness.
I knew there was a cure.
I knew that I needed to raise 150,000 pounds…
but I didn't know what to do and where to start with it.
[suspenseful music]
[Aditi] The doctors did say that a regular bone marrow transplant
probably the outcome would have been a very half-baked life,
you know, with a lot of medical issues. [inhales deeply]
So, they then proposed that they try the
first stem cell transplant
for Severe Combined Immune Deficiency.
I remember the doctors [inhales deeply]
saying that if we had… if they had cells from a perfect match,
they could actually uh… give that
to Aisha without chemotherapy.
They would try it.
And actually, that would even bring the cost down.
And I remember [inhales deeply]
saying to Niren that I am very happy to conceive a child
and abort that child at three months
in the hope that the cells of that child
would match Aisha's and they could use [inhales deeply]
the cells from the fetus to save Aisha.
[wind blowing]
[Aditi] So, the very woman, the very me
who was not willing to…
abort Aisha
was very willing to abort another child…
at three months or even two months
or do whatever it took to save Aisha's life.
[wind blowing]
[vehicles whirring]
[male radio announcer] On the 25th of March this year,
Aisha Chaudhary was born with Severe Combined Immune Deficiency
known as SCID.
[male radio announcer in Hindi] Aisha's parents have managed
to raise 60,000 pounds from all their savings.
[Niren in English] So, the radio appeal goes out.
-[indistinct radio news] -[Niren] Aisha's story touches the
hearts of a nation that is, you know, not her own.
[male radio announcer] It's hoped that the cost won't be as much as that.
But the Chaudhary family desperately need our help.
Once again, please make your donation payable
-to Great Ormond Street Hospital. -[accordion playing]
[accordion and violin playing]
[Niren] I was taking a taxi and going to the Great Ormond Street.
The taxi stops.
It's a Pakistani driver, and he said to me
that there is a little girl called Aisha in this hospital who is sick.
And he gave me five pounds. He said, "Can you give this to her father
because I believe they don't have money."
And before we know it,
the cheques come flooding into the Sunrise Radio's offices.
[ebullient music]
[Niren] And bringing from two pounds to you know
lots of cheques.
And then we were told on Monday that you know, it's not 150,
it's 250,000 pounds!
[ebullient music continues]
[Niren] I think we had maybe ten days and the whole, one entire room was
filled with envelopes of donations for Aisha.
And I was just
stunned by the generosity of this… this country, you know.
The UK. You know, we were not UK citizens.
We were Indians.
We were visiting.
I just wanted to save the life of my daughter.
[inhales deeply] But how…
you know, how deep inside so many of us are basically good
you realize at moments like that.
That, you know… people have so much goodness in them.
-[Niren clicks tongue] -[instrumental music]
[Aditi] I think Aisha's life was saved because
of what we learnt Tanya's time.
[crowd applauding]
My story is different from most
because I had to undergo a bone marrow transplant
when I was just six months old.
And now, I have pulmonary fibrosis
which is a serious lung disease.
My name is Aisha Chaudhary
and I am 17 years old.
And today, I'd like to talk about
what really matters most to me in life.
-[clickety-clack of keyboard] -[ECG machine beeps]
[intense music]
[beeping continues]
Yeah, Aisha was the first child in Europe
to have a stem cell transplant
for Severe Combined Immune Deficiency.
But just to be on the safe side
because they had never done it before, they also gave her the marrow.
[soft music]
[Niren] My bone marrow and my stem cells, they arrived
in Aisha's room and they were
hooked up and she was basically intravenously given it.
And Aditi kept you know kissing her and saying
"This is from Dad, this is from--" [soft chuckle]
"This is from Dad. Make it work, make it work."
[gasps] Come on, cells! Come on, cells!
-Come on, cells! -[Aisha chuckles]
Come on, cells! Papa's cells! Papa's cells!
This is how madly we play every night
to get the cells to work. Okay?
Okay? Come on, cells! Come on, cells!
[Niren] We were joyous. We said that, you know, this is now--
We have taken care of it.
She is going to outlive us.
And we said "This was only temporary
that I look after Ishaan
and Aditi looks after Aisha in the hospital."
And soon we would be together.
[Aditi] Come on, do something for my son.
-[Aditi] Ishaan. -What? Is he in there?
[chuckles]
What's he doing inside the video camera?
Well, hello!
[laughs]
Hey! We are going down to see your sister now.
-Alright. -[Aditi] Come on, let's go.
[boy] I remember Mum would send me these videos
like walking me through the hospital,
to explain everything and seeing some clowns.
I remember one in particular. I was staying at my grandparents'
at that time and I came home from school.
And I was really excited because there was a tape from my mom that…
definitely stuck in my memory and that was one of the
first times I realized you know like she isn't that well.
Even though I was young, I kind of knew.
Hi, Ishaan darling.
This is Mumma.
-Mumma will come back in a few days. -[Aisha sneezes]
-God bless you. -[Aisha sneezes again]
God bless you, Aisha darling. [gasps]
God bless you, sweetheart. Here, Ishaan, see.
[Aditi] This is Aisha darling.
Oh, no! She has taken her tube out of her nose.
-[Aisha coughs] -Oh, my God!
[eerie music]
-[Aisha crying] -[Aditi mumbles]
[mumbling continues]
[soft piano music]
[car whizzing]
-[vehicles honking] -[eerie music continues]
[Aditi] Nine months was a long time.
I was really suffering emotionally without Ishaan.
You know, and I had no support system in the UK at all.
We were alone, Aisha and me.
Hey, sweetie! [squeaks]
[Aisha babbles]
[Aditi] My mother came for three-four months
and that was like a huge relief but uh…
I was really feeling depressed.
I mean I think I was--
Today I can say I was probably clinically depressed at that time.
[clouds rumbling]
-[clickety-clack of keyboard] -[eerie music]
[Aditi] Niren realized that I could no longer handle this alone
and he would have to move to the UK
because it takes ten years for a transplanted
immune system to completely mature.
[feel-good music]
[Aisha] I was in isolation for the first five years of my life.
Basically, no one
my age could… I couldn't be really be around them.
So, I guess that kind of
made me a little awkward and a little shy.
So, I have always had very few friends.
[soft music]
[scribbling]
[Niren] I think the initial years uh… when I was working in Holland,
[inhales deeply] I was working there Monday to Friday.
And then on the weekends, I would come back home.
["Dil Le Gayi Kudi" by Jasbir Bassi playing]
[Aditi laughing] Aisha!
Oh!
[Niren] So, that was hard.
Uh… I did three years of that.
Being there on the weekends and just uh, trying to make memories with them.
[jet boat whirring]
[Niren] I remember Aditi was away for some work
and I took Ishaan and Aisha for a holiday.
-[engine revving] -[water splashing]
-[boy] Oh! -[man] Did you see that?
[Niren] And we used to have a fight every night, Aisha and me.
Every night and several times during the day.
[Niren] Aisha… did you have a nice time?
Hmm.
[Niren] Why?
-[boy] We played with the sand. -[girl] No. Just…
not right.
-[Niren] Are you missing Mummy? -Mm-hmm.
-[Aisha] Mm-hmm. -[waves crashing]
[Niren] Aisha missed out I think those two years of
just having a normal childhood with the sense of
you know playing with the little kids and…
[splutters] and she became therefore as a result
very very attached to Aditi.
So, I was an intrusion
in her life.
Here was this guy who was suddenly there in between
Aisha and Aditi.
-[cursor clicks] -[eerie music]
[Aditi] So, there is a lady called Barb Ballard
who started this SCID mail group.
Her son Ray has SCID. They are in the US.
Almost 20 years ago when this group was started it was really
uh… not just a support for the parents.
It was also meant to uh
help doctors to make better decisions.
[slow music]
[cursor clicks]
[indistinct cheering and chatter]
-[woman 1] Come on, Aisha! -[woman 2] Yay!
[Aditi] Aisha has won!
-Yay! Well done, Aisha! -[woman] Well done!
[nursery rhyme]
[Aditi] We put her in a playschool.
But she would never speak to any of the children.
She spoke to all the teachers, but she
ignored all the children.
She just never spoke to them.
[eerie music]
[piano music]
[Aditi] I remember from the SCID mail group
they said that children who have bone marrow transplants
because they beat death, they defy death when they are very very little,
they start to feel uh…
very big inside them.
They feel like they are more important than the rest of the world.
[eerie music continues]
Aisha felt hurt very quickly
uh, because she really craved
uh… friendships.
Peer relationships always were hard for her.
[clickety-clack of keyboard]
[children screaming] Higher! Higher!
Higher! Higher!
[children cheering]
[woman] And she's coming back.
[Aisha screaming]
[Aditi] And I remember when Niren told us
that we will be moving to Holland, she was quite happy
because she said, "Oh, now I won't have to you know, handle them!"
♪ Say that you love me ♪
♪ Tell me that you'll always be around ♪
-[Aisha] I was learning acting, -[woman] Hmm.
I went to uh, um…
I went to the LAMBDA School of…
like, the drama school.
-[woman] Yeah. -And then I used to do plays
-after school, so that was my interest… -[Niren singing]
in Holland.
The first signs of problem which I guess
I didn't realize was such a huge issue was that
her uh… height was very less for her age.
[Aditi] But the doctor said, "As long as
she is running parallel to the growth chart,
even though her growth is way below, it doesn't matter
because the chemo will affect her height."
[upbeat music]
[indistinct chatter]
[Niren] As we saw her with her friends,
and you visibly start seeing the difference
and then you know that there is… it is not normal.
[Aditi] By the year 2005, they had discovered that even though Aisha
had normal levels of growth hormones, something had obviously gone wrong.
And uh… she was not growing in height or weight.
[Aditi] She had functional issues with it.
Like when she was in a group of people, she couldn't hear what people were saying.
If there was a lot of background noise or music,
she couldn't hear them because she was just
way lower than where her friends were.
And then we got her checked out in the Netherlands.
And there, they said that her body is producing the growth hormones.
But they are having no impact.
-[cursor clicks] -[eerie music]
[eerie music intensifies]
[Aditi] So, they started on the growth hormone only as a test case.
And actually she was the only one in our group who
had such a picture
that there was nothing wrong with her growth hormone levels.
But she was not growing.
-[scribbling] -[ECG machine beeps]
[Niren] She ended up getting bullied a lot because of that.
Kids in the bus also used to taunt her.
Make all kinds of uh…
remarks about how small she was and how
actually she is a liar because she can't be that…
that old and she is much younger.
[Aditi] And I remember she got off the bus one day and she just broke down
and she said, "I can't take it anymore.
I am so small… [inhales deeply]
that everyone thinks that it's okay to bully me.
And I just don't want to live anymore.
-I just wish I was dead." -[scribbling]
[eerie music intensifies]
[eerie music fades out abruptly]
[clickety-clack of keyboard]
[ECG machine beeps]
-[Aditi] Doggy? -[Aisha] This is Kobe.
Say hi, Kobe! Hi!
[Ishaan] Aisha and I decided that we really wanted a labrador.
The minute we got there, he was the first one to walk over
-[dog barks subtly] -and I was like, "He looks like a Kobe."
And she was like, "Yeah, he does."
This is my Kobe hug.
[Aisha] I find it so interesting
that even though they can't speak a word
dogs can become the closest thing to your heart.
Your very best friend and your companion.
I love to observe them
and try to figure them out.
And I can't help but get inspired.
Dogs are so similar to humans
yet they carry qualities
that we humans struggle to achieve at times.
Dogs can find happiness in the smallest of things.
[emphasizes] Dogs are delighted with a walk,
ecstatic with a small treat,
and in heaven when you tickle their belly.
-[Aisha giggles] -[Kobe whines]
[happy music]
[children speaking indistinctly]
[children squealing]
[boy] It got on you.
[Aditi] She was very very happy when three months later
you know there was a shift in her growth chart.
So, then they tested her to see if her ovaries were working.
-[clouds rumbling] -And they realized that even her ovaries
had been damaged by the chemotherapy.
So, she would not enter puberty naturally.
Uh… she had to have medical help for that.
Because Aisha said, "So, I will never be a mummy."
And I said, "It doesn't matter.
You know you can always adopt children."
-[man talking indistinctly] -[Aisha] Woo-hoo!
[children screaming]
[Aditi] So, the chemo had caused quite a lot of damage but
the doctors were very very clear that
without the chemo, she would not have survived.
[soft piano music]
[soft music]
[Aditi] In 2007, Niren was offered this position
to move to India with the "Yum"…
and he was so keen to take it.
I just didn't want to take the chance with Aisha's health.
So, I spent almost 20 days talking to different doctors.
We had all her tests redone at Great Ormond Street.
Doctors at Great Ormond Street had no concern.
[soft music continues]
I spoke to the doctors in India.
Most of them kind of said, "Don't come back."
[chuckles softly]
[soft music continues]
A family is made up of four people.
It cannot all and only be about Aisha.
[all] Bye, Aisha! Bye!
-[Aditi chuckles] Thank you! -Bye-bye.
-[girl coughs] -[Aditi] Hey, Aisha!
-Yeah? -[indistinct chatter]
[Aditi] Do you have anything to say?
Yeah, I'll miss everyone.
[soft music]
-[boy] Ow! -[woman 1] Hey!
-[girl screaming] -[man] Come on!
-Give me! -[indistinct cheer]
-[indistinct chatter] -[girl squeals]
Whoo!
[chants a hymn]
-[Niren] Aisha, say "Happy Bhaiyya Duj"-- -[Aisha giggles]
"Happy Bhaiya." [giggles]
-[Niren] Whatever! -Eat it!
-[Niren and Aisha chuckle softly] -Ah!
[Niren] Alright!
[boy squeals]
[soft music]
[Aditi] Aw!
[soft music intensifies]
[indistinct chatter]
-[drumming] -[indistinct chatter]
-[drumming fades out] -[clickety-clack of keyboard]
[Aditi] I remember taking her to Dr. Taneja in India
just to have her American school form filled out.
It was him who noticed
that she had a slight uh
caving on her chest on the left side.
-[eerie music] -[clicking]
[serious music]
[clicking]
[Aditi] I rushed her to the UK and that's the first time we knew that
you know she had only 40 percent lung capacity.
[wind blowing]
Doctor said, "It's okay, she won't run a marathon.
But you know it won't be the end of the world.
We will keep an eye on it.
This is a side effect from the transplant
but you know, it's not going to be life threatening."
[all cheering and applauding]
-[cell phone chimes] -[waves crashing]
-[eerie music] -[cell phone chimes]
[cell phone chimes]
[Aditi] She would often say, "Why am I so thin?"
And then I would say, "Eat! Eat some more."
She used to say, "I don't know what is wrong.
You know, I take two bites and I am really hungry.
And I order this big meal. I take two bites and I am full."
-[indistinct chatter] -[cell phone chimes]
[cell phone chimes]
[slow music]
[Aditi] Aisha was assessed as too below weight
because she wasn't able to orally take
as many calories as she needed to put on weight.
They decided that we should now
insert a mic-key button into her stomach and she should be fed through the stomach.
-[man speaking indistinctly] -[all screaming]
[water thrashing]
[Aisha] I have a tube in my stomach.
So… it's a feeding tube.
To wanna have to put that in,
that was the most painful thing I've experienced.
It was a whole surgery.
-And they put a disc inside your… -[woman] Hmm.
your stomach, and then it's attached to a tube.
-So um… when I had to put that in -[ECG machine beeps]
that was the most painful thing I have
ever experienced. [hesitates] Because I have never
remembered having surgery
-so that was the first, you know like -[woman] Hmm.
thing um… I remember like
screaming in pain after I woke up and staring at the wall
not knowing what had happened.
So, that was really tough.
[ECG machine beeps]
[clickety-clack of keyboard]
[cell phone chimes]
[poignant music]
-[piano music] -[cell phone chimes]
[cell phone chimes]
[Niren] She was put on a certain type of steroids.
Now these steroids… the side effect is that they
have an impact on your muscles.
And although they open up your lungs,
they actually waste away your muscles and you can lose mobility.
[Niren] And Aisha…
suddenly from one day to the other was unable to walk.
[clicks tongue] One night I remember that
I suddenly heard Aisha screaming at night.
And I ran to the room.
She said to me that "Dad…
something's happened to Kobe."
So, I look at Kobe.
And Kobe is, you know, quite a young stud at that time.
He was maybe six to seven years old.
[Niren] And he was just whimpering in a corner near her bed.
And I asked him to get up and he just couldn't get up.
He tried to get up and his legs would shake and he just fell down.
[inhales deeply] And she started crying and saying, "What has happened to Kobe?"
And she told me that you have to take him right now.
It's the middle of the night, two o'clock.
"Take him right now to a doc!
And make sure that he is okay."
And after maybe two hours of me roaming around
trying to find a doctor which I couldn't.
I just opened the boot of the car.
And this guy just bounded out as if nothing had happened
and started running like mad.
-[Kobe barks] -[happy music]
[Aisha laughs] Oh, my God!
[laughing continues]
[Niren] Now I had heard of this thing of you know
dogs are so faithful and so loyal
that they take away the illness of the master.
And whoever they are closest to,
they start reflecting that.
And then I think we changed her medication.
Gave her steroids that didn't have the same side effect.
And… slowly her mobility came back.
[Aisha imitates Bob Marley] I… I am the one and only…
Bob Marley!
[upbeat music]
-Yo! [giggles] -♪ Move to the groove ♪
[Aisha and Niren giggle]
♪ Let go ♪
♪ As the rhythm grows ♪
♪ Hands in the air ♪
♪ Let 'em pop ♪
-♪ When the beat drops ♪ -[Aisha breathes heavily]
-[wind blowing] -[Aisha breathes heavily]
In 2009, November, Aisha collapsed on the stairs in school.
So, when we took her, that was the first time
that they noticed that there was a drop in the lung function.
-[Niren] And she has something called -[ambulance siren wailing]
pulmonary fibrosis.
That's the first time I heard of pulmonary fibrosis.
He uh… drew this graph
and said, "Well, just to explain to you,
you know her lung capacity was at 40 percent.
Now it's here at 35 percent.
And uh… you know it could go all the way down to zero
uh… in time or it could…
sort of go like this and just stabilize at some point.
[Aditi] Ishaan started crying.
Niren had tears running down his face. I was crying.
I knew she had heard and I knew that she knew what that meant.
[sad music]
[Niren] That basically meant that you'll--
It's the hardening of the lung.
One of the things that causes it can be chemotherapy.
-[slow music] -[waves crashing]
[Niren] It's irreversible, so, your lungs just get harder
and harder and harder that you can't breathe.
[Aditi] Dr. Rosenthal said "Well, you know her best chance is to have
part of your lung because she is so small.
Because you are the donor."
[splutters] But he said Live Lobar Transplant in the UK is not ethical.
So, an ethics committee would have to, you know
sit and it would take a bit of time to determine that.
And Aisha suddenly piped up and said, "But it's my birthday, it's Holi.
I want to go back to India for Holi."
Now life can be tough…
when every single breath you take
is a struggle… and…
the slightest infection
causes a serious, life-threatening exacerbation.
I can either choose to be happy
and try to smile through all of my difficult times…
or I can choose to be miserable
and get overwhelmed by it all.
Now it's not that by being miserable,
I am going to get any better.
So, I may as well choose to be happy.
And if I have to have pulmonary fibrosis…
I choose to have a happy pulmonary fibrosis.
So, happiness is clearly a choice one can make.
No matter what, no matter where,
you can find it if you look for it.
[girl] ♪ It's Holi ♪
[guitar music]
♪ Happy Holi ♪
♪ Fuck Holi ♪
♪ All I want is bhang ♪
♪ Let's get wasted ♪
♪ Let's get fucked up ♪
♪ So fucked up ♪
♪ Whoa-oh! ♪
♪ Oh! ♪
♪ Fuck, yeah! ♪
[song fades out]
[Aditi] After that, we actually reduced her time at school.
She was then going to school only half time post that diagnosis.
-[scribbling] -[ECG machine beeps]
[Aditi] She was not able to do much physical activity after that.
She would not run.
She would walk everywhere.
She was breathing about
28 times a minute.
And the normal breathing rate
for her would be around 16 to 18 to 20.
She was, uh, prescribed
one liter of oxygen a minute
right from 2010 onwards, but she refused to use it.
[eerie music]
[Aisha] We went to Rishikesh on a school trip.
-[woman] Hmm. -[Aisha] I just had a cold.
And so, I was coughing in the middle of the night.
My roommates, they were like
"Ugh! Why are you coughing so much like…
like, shut up, you know like--"
And-- And I was-- I didn't know what to do like
so, I ran in the middle of the night to the…
-to my um… to my nurse -[woman] Hmm.
and to her tent… and I was balled my eyes out.
[slow piano music]
[music intensifies]
[Ishaan] I am not gonna name names, but kids could just be mean.
She always was short
and like her growth was stunted due to her illness, so
one day she came and she was really upset
because one girl who was her friend like
got on her knees and was like "Oh, what's it like from down here?"
and you know just kinda like…
like take the mic out of her.
[Ishaan] And she hated it.
[eerie music intensifies]
[all cheering and applauding]
[all cheering and whooping]
[eerie music]
[sad piano music]
[Aditi] Ishaan started his university in 2010.
He went off to the US.
[Niren] So, this is the room. Room F!
And you can see…
It's a luxury bed.
[Ishaan] Kind of struggling.
[slow piano music]
[projector whirring]
[camera shutter clicks]
[dog whimpers]
[Ishaan] We got Rolo shortly after she was um…
diagnosed with the pulmonary fibrosis.
It was a new life-- In her life, it's a lot of fun
you know when you have a new puppy and then
while she was at home and I think a little time I was away in college
and stuff, she would uh…
just kinda have them to chill with which
which, you know made her really happy.
[Rolo barks]
-[Ishaan] Not now, please. -[Rolo barks]
-[Rolo whines] -[Ishaan] Out.
[Rolo whines]
[Aisha] I feel that happiness
is also doing what you truly love
and for me, my love is for art.
Simply because it allows me to express myself
in such a beautiful and unique way.
[Aisha] As I dip my brush,
and the vibrant colors of paint…
I can almost feel the paint
being smeared on to the fabric of the canvas.
I tend to forget all of my worries
and the difficult situation that I am really in.
It almost becomes, a whole other world
where-where I can escape
at least for a little while.
[piano music]
[clickety-clack of keyboard]
[ECG machine beeps]
[Aditi] In 2012, when we went to the US for a five-day visit
to see Ishaan in his university.
At that time I thought that she is very very interested
in this boy because he came and picked her up
and just took her to show her the university and stuff.
And I thought that's interesting.
I didn't know he was such a good friend of Ishaan's.
[cell phone chimes]
[Ishaan] I had never seen Aisha be like smitten with anyone like that.
[cell phone chimes]
He saw how cool and fun she is, so he was chatting with her a lot.
And then, it kind of
stretched a bit further than I thought
because they stayed in touch.
[cell phone chimes]
GOOD MORNING, FATTY
[cell phone chimes]
-[feel-good music] -[cell phone chimes]
[cell phone chimes]
[Niren] When she fell in love, she just absolutely blossomed, you know.
She was so happy and she would just
block out… her physical condition and
not think too much ahead in the future. Not even a few months.
She was just so alive in the moment and so joyous.
[whispering] Hi!
Okay, yeah! I've tried this like so many times.
Um…
yeah!
I just gonna see if it works.
And I'll post a longer one
because…
my mom's sleeping.
It's awkward.
[feel-good music]
[cell phone chimes]
[Niren splutters] When there used to be a planned phone call
with… with this guy, she would throw us out of the room.
And say, "Don't come and don't disturb me.
I am very busy for the next few hours."
And she would chat with this person for you know
quite a few hours and she'd be beaming from ear to ear.
[feel-good music continues]
-[feel-good music fades out] -[eerie music fades in]
-[cell phone chimes] -[ECG machine beeps]
[cell phone chimes]
[Aditi] Part of her lung fibrosis is
that the lung becomes very sensitive
to air and everything in the air.
So, she had to be on an anti-allergen every day.
And this anti-allergen was pretty strong and you know
it was giving her a lot of social anxiety.
Then, she was also getting very terrible nightmares.
[elevator creaks]
[elevator opens and shuts]
[Niren] One of the things I really wanted to explore was the lung transplant
because, for me…
that was the only way
that I would be able to extend her life
by another five years
and in those five years perhaps…
you know some other medical
advancement may have happened.
I always knew that I would not be party to it.
I would not be able to party to it
because for me, it is a huge ethical dilemma.
It can reduce Niren's life.
[splutters] You know, depends. He… the…
I-I just--
For me it's very difficult to uh… to uh…
uh… condone something like this. I-I just can't.
It just seemed like way too invasive for…
for the odds and… and what it would have really given to--
It wouldn't have even given that much.
Because what… what's even living
if it's just so miserable and you can't do anything!
-[eerie music] -[ECG machine beeps]
[cell phone chimes]
[Aditi] I felt, she should make this decision for her life
whether she wanted a lung transplant.
And I was okay with her having a lung transplant from another donor
but I had huge reservations.
[cell phone chimes]
[coughs]
[Aditi] It was in 2014…
that the number of breaths that she took
became 44, at rest.
If she had a coughing fit now, she would sweat profusely.
She would-- Her body would really be under a lot of stress.
[coughs]
[ECG machine beeps]
[Aisha] Although I have this disease,
I am still grateful that I can walk around
and do what I love to do.
And I am even more determined
to make the most
of this wonderful gift of life that God has given me.
Of course, there are days when I feel extremely down.
Where I feel like simply
curling up into a ball
and just giving up!
But then the realization
that things could always
be much much worse
always pushes me to get back up on my feet
and put a smile on my face.
I accept who I am!
I accept where I am at.
And I accept the challenges
that I am battling with today.
As Anderson once said,
"Enjoy life, there is plenty of time to be dead."
[crowd applauds]
Thank you.
-[Aisha] Thank you. -[cell phone chimes]
-[crowd applauds]
[cell phone chimes]
[Aditi] In February of 2014,
Aisha had just finished giving her happiness talk
at the shift conference and uh…
when I took her to the bathroom to brush her teeth
she collapsed and said, "I can't breathe."
And I kept-- I increased the oxygen
right to the maximum that we had
on her machine and she still couldn't breathe.
[Aditi] And so we had to rush her to hospital.
And they did a lot of tests, but when I sent them to the US
they didn't agree that… her heart was alright.
They felt her heart had definitely now gotten involved.
-[wind blowing] -[soft music]
[Aditi] Her heart was so bad
that she could not even sit with her feet dangling on the bed.
Her feet had to be elevated.
And uh, if she sat up in bed, her heart used to flutter
so badly that she just had to lie back.
In a position like that,
you're not really going to have
any quality of life.
You're not going to be able to move, your muscles are going to go.
[Aditi] So, I took the mic-key button out.
And uh… guess what!
Her heart stabilized.
[Aditi] She was able to sit up.
She was able to dangle her legs off the bed.
She was… able to go back to swimming even.
-[cell phone chimes] -[pleasant music]
[cell phone chimes]
[Aditi] Amazing!
[cell phone chimes]
[Aditi] And Aisha and I used to have
a lot of discussions about
sleeping with people.
[pleasant music]
And she would tell me, "How can you be that close to somebody, you know."
[inhales deeply] Don't your armpits smell? [laughs]
[clickety-clack of keyboard]
"COME, LET US FIND HIM."
[slow music kicks in]
[slow music continues]
[woman announcer] I would like to call up Aisha Chaudhary
-to receive her certificate of attendance -[crowd applauds]
from the American Embassy School.
[crowd applauds]
[Aditi] She got a certificate of attendance.
She did not get a diploma.
It looked exactly the same and they were so wonderful.
They made it, copied it exact. [soft chuckle]
[soft music]
[Aditi] He decided to surprise her
for her graduation from school.
And so since this boy came down to Delhi,
she decided to give him the card.
[pleasant music]
[Ishaan] It was hard for me to read that.
That was the first time I directly had been
able to hear, like see her feelings you know, and it was so direct
and beautifully innocent
and she wasn't asking for anything…
at all, she was just…
wanted to say how she felt, you know.
[feel-good music]
[Niren] I think once she realized that she was…
feeling so much emotion,
she wanted that to be reciprocated.
She wanted to have an honest conversation about it.
[feel-good music continues]
[Aditi] Aisha was once a part of a bridal shower
where she was picked
to be dressed as the bride in toilet paper.
And uh…
she won that afternoon.
I remember not discussing it with her.
But I remember just… her
holding me and we hugged each other for a very very long time
that evening.
Um… looking at the photographs, you know…
she knew that she may never get married.
And attending that wedding
really brought that you know… uh…
brought all that to the surface.
But we never really discussed it.
[poignant music]
[clickety-clack of keyboard]
[Aditi] He had a wedding in his family and I remember he did not reply to her
and uh… she was so hopping mad.
For two months, she was like, "Oh, my God! Has he read it?
Has he lost it?
Does he even have the letter? Did he even read it?
Or did it get lost somewhere in the travels?
Why isn't he saying anything?"
[sad music]
[cell phone chimes]
-[cell phone chimes] -[sad music continues]
[Niren] She went on this emotional roller coaster of
the highs of being in love
and then expressing herself.
And then, somewhat feeling abandoned because
you know this kid didn't really know
how to deal with it.
[clickety-clack of keyboard]
[cursor clicks]
[Niren] But you know somewhere it is--
I feel happy that she experienced the joy of being in love.
Such a wonderful part of being alive.
[slow music]
[Aditi] And then in 2014, as her health declined more and more and more
and her coughing fits were becoming worse and worse.
She was doing less and less.
[Aditi] She didn't even have the energy to
[inhales deeply] hold the canvas to paint.
She could no longer paint.
[Niren] Aisha would also get quite annoyed when she felt
the unsaid expectation from people around her
that you know, "How can you be
upset today or how can you be sad
with what's happened to you, I mean…
given the fact that, you know, you talk about happiness."
And she would very often
say to me, "You know these talks…
you know, they just talk about one aspect of life
which is you know just happiness and everything is good and…"
She then started to just jot down her thoughts.
[clickety-clack of keyboard]
[Aditi] And uh, when she showed it to me…
I think she had about
uh… 30… 30 quotes.
And she called them her epiphanies.
[Ishaan] Me and her had a Google word doc…
that I would look at while I was at work.
Um and I would check out
you know what she has been writing and just would comment on them and--
It was really crazy for me to--
It was the first like deep inside I had into
how she is thinking it.
[slow music]
[Aditi] It's really hard when you are losing one thing
after another, after another, and the loses are just piling up.
You know, so from not being able to walk
she went to not being able to get out of bed
to even have a bath or have somebody bathe her.
That's how little breath she had left in her.
[clickety-clack of keyboard]
[soft music]
[eerie music fades in]
[bubbling]
[cell phone chimes]
and he was like, "Mom is not… not doing good.
She's been acting really crazy and
she's locked herself in a room and she won't come out.
Like, can you speak to her?"
So, when I spoke to her though, she was just like…
jabbering about some stuff
and I was getting really upset 'cause I had never heard her like that.
It was really scary
to hear your mum just like comp… like off the rail.
I had to force her along with her brother…
uh, to take her to the hospital.
In the car… she started speaking in the voice of a little girl.
That really completely froke me out.
And she said that her name was Aisha.
And she said she is gonna die.
[spooky music]
[Niren] Her brother, fortunately who was there
and her sister-in-law.
So I told them, "You please look after her, I have to go back to Aisha."
And I was paranoid. I didn't want anything to happen to Aisha.
Because what if Aisha dies in the next three days?
And Aditi comes and there's no Aisha!
I mean, she will then you know permanently…
lose it.
[cell phone chimes]
[Niren] She had this incredible sense of humor, Aisha!
So, she said to me, "What's happened to Mum?"
[rhythematic whistle]
Has she gone cuckoo?"
She said to me. [laughs]
I said, "Yeah, Aisha, she hasn't slept."
And she rolled her eyes.
"She is a drama queen!"
[pleasant music]
[Niren] And even when after Aditi came back,
she was like a zombie for like two weeks.
She was so drugged out. She had no idea.
I think for another couple of days, she didn't…
talk or reach out to Aisha
which was unthinkable.
And I think that must have really…
rattled Aisha as well.
[poignant music]
The fear was growing because now the last medication left really was morphine
because when a child has uh…
uh… has lung fibrosis
um… they can feel a lot of suffocation.
[heart thumping]
[Aditi] I told her about the morphine.
I told her that we are going to be starting it.
And I remember she said, "So, what does that mean?"
And I was just quiet. I said, "It will help you, Aish."
And she just said, "How?"
And then she said…
[eerie music]
[clickety-clack of keyboard]
[Niren] So now, the book was, the project was on
and I felt that because she had that to look forward to…
that she would not give up very quickly.
And in some ways, I didn't want it to end.
-[feel-good music] -[camera shutter clicks]
[camera shutter clicks]
[Aditi] I remember when, you know, they were editing uh…
the book,
she would fight over every full stop, every comma!
She didn't want…
you know, the profanity that's mentioned in the book--
She didn't want that removed.
[Niren] And she said, "And I don't want anyone to have anything to say
about how my book will be designed or how it will look.
I want to have the final word."
[feel-good music continues]
[Niren] Aditi and I were taking turns
to sleep with her because she did not want to be alone.
So, this night I was sleeping with her
and giving Aditi a break so she could… she could uh…
be in her room.
And I think at six in the morning,
Jeet called me from the kitchen.
And he said, "Something has happened to Rolo."
So, I run out of the room and he is dead.
Rolo has just… passed out.
I-I touch him and there's no heartbeat. There's nothing.
[sad music]
[Aditi] We didn't… we were not expecting him to die. He was only three years old.
[Aditi inhales deeply] And uh…
I thought it was important for her to see him…
one last time.
And I am not sure if that was the right decision but…
she was freaking out because he had been dead since 8:30 in the morning
and uh… we broke the news to her
when she woke up at about 12:30 in the afternoon.
[clickety-clack of keyboard]
[Niren] I can't forget the piercing scream that she let out and this is…
from Aisha who couldn't--
She was not able to breathe
and she used to say you know, "I feel so bad I can't even cry.
I don't have the lung capacity to even cry."
And she screamed
which meant, you can imagine the kind of effort that it took.
I rush into her room and she was
thrashing about and she was
so so so upset!
[inhales deeply] And she started screaming and… and…
at God and she said, "You know, what do you want from me?
You know, you have taken everything I had, now you've taken Rolo."
[piercing music]
[Aditi] Niren hurriedly then took him away and uh…
to this place called, "Paws in Heaven."
And they normally burn the… burn the body
and they bury the ashes with the name.
She said… "I can't imagine that you burnt him into thin air."
[Aditi] That was the day I realized that we cannot cremate her.
We… we should bury her.
You know because I buried Tanya because of my faith.
But uh… [voice trembles]
she would have preferred to be buried.
[Ishaan] It was like a mother losing a child,
like that's how upset she was. Um…
and I think a part of it was also her grieving her own death.
-[scribbles] -[sad music]
[Aditi] She was just absolutely in pain.
It was so much emotional pain and physical pain
[quavers] because her body would not allow her to cry.
And I remember…
[quavers] increasing the oxygen and increasing the oxygen
and her saturation is falling.
And she was just screaming, screaming, and howling. [sobs]
[quavers] And she kept looking at me the whole time
and I knew what she was thinking.
[quavers] I knew she was thinking that this will be you, soon.
[ECG machine beeps]
I must confess… that
I did wonder…
if I was going to die…
and I would have sleepless nights
just thinking, tossing, and turning
with this idea that soon…
I may be gone.
And if that's going to happen…
[emphasizes] what's the point…
of anything?
I think about this for hours
and get nowhere.
But then it suddenly struck me…
that I am not really alone in all of this.
Is it not true that not just me…
all of us sitting in this room today
will be gone?
Just at different times.
Some sooner than the others.
So then, if death is the ultimate truth…
what should really matter most in life?
[gloomy music]
[gloomy music intensifies]
[Aditi] Aisha… only mentioned God
towards the very end of her life
where one day she said to me, "I am so angry with him.
I think he is like this big bird who just
hovers around and shits on me every now and again.
And he has taken so much from me.
And I am really mad with him."
[ECG machine beeps]
[Aditi] And she said, "I want to throw darts at him.
Just like he throws at me."
And I said, "You should!"
So, I said, "So…
whose picture do you think I should print out?"
And she said, "I want Jesus' photo there."
[eerie music]
-[clickety-clack of keyboard] -[wind blowing]
[pleasant music]
[Aditi] We had planned a book launch party for Aisha
on the 28th of January.
So, she got excited and said,
"I really want to get a dress
and I have spoken to this friend of mine
and she is coming and she is going to design a dress for me
to wear for my book launch."
-[excited] Hi! -[feel-good music]
[groans and giggles]
[Aisha] Hi!
Hi! Chips!
Hi! [gasps] Hi!
[Ishaan] I had flown back and I had decided to extend my trip.
And Mum was taking a lead on the party.
And there was a lot of hustle-bustle with that.
But Aisha was more concerned about
this interview that was about to happen.
Um… it was that last interview that she gave.
[woman] What is the message you want to give to the world?
Everyone's just fighting their own battles together and…
we are all on a roller coaster ride.
Writing this book has really
uplifted me and so
I wanted like my readers
to find peace
on whatever roller coaster ride
[quavers] they may be on, so…
I hope that's what will happen.
[wind blowing]
[clock ticking]
[Ishaan] We were up really late till like four or something…
[clicks tongue] and I went to bed and I woke up
uh, to Aisha coughing.
-[ECG machine beeps] -[clock ticking]
[Aditi] Santoshi, the maid, woke me up at 11.
And something in her voice told me that
this was really bad.
I rushed into the room
and I put my hands on her
to give her some touch healing and
started looking at all the monitors and
managing the oxygen…
and uh…
her cough…
was really really really bad.
I actually rang Niren's secretary and said,
"Send him home! Send him home now!"
She was like really breathing very heavily and she was you know really…
looking very uncomfortable and thrashing about.
And that's the time when she held onto my hand and she said,
"You know, I don't want to die. You know, save me."
And I said, "No, no, nothing will happen to you."
The pulmonologist came
[quavers] and she said, "It doesn't look good. You know what this means."
And she spoke to the critical care specialist.
And he said uh…
"No, we… we should not move her now
because just moving her can kill her.
So now, just leave her there."
And life had come a full circle. We had gone to the Kamats'
um… to save a life 18 years back.
And Rita heard in Aditi's voice
the previous night that she just…
felt instinctively that Aisha doesn't have long.
And she took a flight and she landed.
Rita was sitting at her feet giving her Jin Shin Jyutsu.
She didn't want to move from there.
Niren and Ishaan were on either side of her.
And I just left them to it.
[quavers] And I think part of me was
so scared that I was chicken!
I could not… I could not…
be with her at that time.
[quavers and sobs] I had to be there for her but not with her.
[gloomy music]
[Niren] The doorbell rings, I go there, open the door.
The book is there.
I run to Aisha's uh… bedside
and the book's title is you know like braille.
It's embossed, My Little Epiphanies
and I run her fingers on the…
on the title of the book and I said, "Aisha…
your book is here."
[gloomy music continues]
And she nodded faintly and she smiled.
We've run out of words.
There's nothing left to say.
And we're just holding each other.
And just… waiting.
[soft guitar music]
[Ishaan in a quavering voice] I told her like, "I love you so much and…
I may act like I am more hard and I don't…
I'm okay, but
I think about you every single day and…
like… you mean so much to me.
[Ishaan] She got up,
she took off her oxygen, she gave me a kiss like…
[gloomy music continues]
I did say to Aisha in the last year of life that
"Do you think that it was easier for Tanya?
That Tanya's life was in some way easier than yours.
She was actually very upset with me
and she said, "What kind of question is that?
Why would you ask me that?"
[sniffs]
It was very very selfish of me
because somewhere I think I wanted Aisha to absolve me.
Absolve me for having… had her
saved her life, taken her through transplant
only to give her all the pain of a fibrosis.
[quavers and sobs] Because somewhere I think if I didn't believe
"Thou shalt not kill"
then none of this would have been… have happened to her.
[sad music]
[interviewer] Do you plan to write another one?
Um, I am thinking maybe…
maybe a sequel…
of My Little Epiphanies…
because like my thoughts are never-ending…
so, um…
or… I am not sure.
Maybe, I don't know. [soft chuckle]
[gloomy music]
[wind blowing]
[sobs]
[birds chirping]
[Niren] I was once again
in the same graveyard where Tanya was buried.
And they said that now we do vertical graves,
one on top of the other
because we don't have room.
And which meant that, both my daughters will be in the same grave.
And that was just…
I mean just unbearable for me.
Some comfort that my daughters were together
but I think…
it was mostly grief.
[indistinct chatter]
[Aditi quavers] People stood in silence
for Aisha in Jaipur at the Lit Fest
at the very same time that we were burying her in the ground
in… in Delhi.
[poignant music]
[poignat music intensifies]
[poignant music intensifies]
[music fades out]
[pleasant music fades in]