Black Sunshine Baby (2023) Movie Script
Hey!
You okay?
I remember my earliest
memory was, uh, my third birthday.
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.
-Aishu!
-Hello!
-I think we're gonna miss
-What are you doing here?
-miss our train.
-No it's said just now,
-I am playing
-fifteen minutes left.
-with the snow. Whee!
-Whoo!
-It's fun! Mum!
-Mummy, it's snowing!
I know!
Aisha just happened.
She was the desire of the universe.
Yeah, after having been through something
as horrific as I went through with Tanya
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.
Had it not been for my faith,
I think any other sensible person
would have just aborted that child.
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 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
And you have
such conflicting emotions.
You feel like, "I hope she
won't feel cold."
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.
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.
Had it not been
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.
I used to be very
close to my brother.
And we used to play games and
-play in the park and--
It was quite normal from
what I remember. Hmm.
-Here you go!
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.
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.
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.
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--
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.
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.
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.
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.
So, they then proposed that they try the
first stem cell transplant
for Severe Combined Immune Deficiency.
I remember the doctors
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
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
the cells from the fetus to save Aisha.
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.
On
the 25th of March this year,
Aisha Chaudhary was born with
Severe Combined Immune Deficiency
known as SCID.
Aisha's parents have managed
to raise 60,000 pounds
from all their savings.
So,
the radio appeal goes out.
-Aisha's story touches the
hearts of a nation that is,
you know, not her own.
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.
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.
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!
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.
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.
I think Aisha's
life was saved because
of what we learnt Tanya's time.
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.
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.
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--"
"This is from Dad.
Make it work, make it work."
Come on, cells! Come on, cells!
-Come on, cells!
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!
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.
Come on, do
something for my son.
-Ishaan.
-What? Is he in there?
What's he doing inside
the video camera?
Well, hello!
Hey! We are going down
to see your sister now.
-Alright.
-Come on, let's go.
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.
-God bless you.
God bless you, Aisha darling.
God bless you, sweetheart.
Here, Ishaan, see.
This is Aisha darling.
Oh, no! She has taken her tube
out of her nose.
-Oh, my God!
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!
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.
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.
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.
I think the initial years uh
when I was working in Holland,
I was
working there Monday to Friday.
And then on the weekends,
I would come back home.
Aisha!
Oh!
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.
I remember Aditi was away
for some work
and I took Ishaan and Aisha for a holiday.
-Oh!
-Did you see that?
And we used to have a fight
every night, Aisha and me.
Every night and several
times during the day.
Aisha did you have a nice time?
Hmm.
Why?
-We played with the sand.
-No. Just
not right.
-Are you missing Mummy?
-Mm-hmm.
-Mm-hmm.
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
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.
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.
-Come on, Aisha!
-Yay!
Aisha has won!
-Yay! Well done, Aisha!
-Well done!
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.
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.
Aisha felt hurt very quickly
uh, because she really craved
uh friendships.
Peer relationships
always were hard for her.
Higher! Higher!
Higher! Higher!
And she's coming back.
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!"
-I was learning acting,
-Hmm.
I went to uh, um
I went to the LAMBDA School of
like, the drama school.
-Yeah.
-And then I used to do plays
-after school, so that was my interest
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.
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."
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.
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.
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.
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.
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.
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
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."
-Doggy?
-This is Kobe.
Say hi, Kobe! Hi!
Aisha and I decided that we
really wanted a labrador.
The minute we got there, he was
the first one to walk over
-and I was like, "He looks like a Kobe."
And she was like, "Yeah, he does."
This is my Kobe hug.
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.
Dogs
are delighted with a walk,
ecstatic with a small treat,
and in heaven
when you tickle their belly.
It got on you.
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.
-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."
-Woo-hoo!
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.
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.
I spoke to the doctors in India.
Most of them kind of said,
"Don't come back."
A family is made up of four people.
It cannot all and only be about Aisha.
Bye, Aisha! Bye!
-Thank you!
-Bye-bye.
-Hey, Aisha!
-Yeah?
Do you have anything to say?
Yeah, I'll miss everyone.
-Ow!
-Hey!
-Come on!
-Give me!
Whoo!
-Aisha, say "Happy Bhaiyya Duj"--
"Happy Bhaiya."
-Whatever!
-Eat it!
-Ah!
Alright!
Aw!
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.
I rushed her to the UK and
that's the first time we knew that
you know she had only
40 percent lung capacity.
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."
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."
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.
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
-Hmm.
your stomach, and then
it's attached to a tube.
-So um when I had to put that in
that was the most painful thing I have
ever experienced.
Because I have never
remembered having surgery
-so that was the first, you know like
-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.
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.
And Aisha
suddenly from one day to the other
was unable to walk.
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.
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.
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.
Oh, my God!
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.
I I am the one and only
Bob Marley!
-Yo!
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.
-And she has something called
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.
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.
That basically meant that you'll--
It's the hardening of the lung.
One of the things that causes it
can be chemotherapy.
It's irreversible, so, your
lungs just get harder
and harder and harder
that you can't breathe.
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."
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.
After that, we actually
reduced her time at school.
She was then going to school only half
time post that diagnosis.
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.
We went to
Rishikesh on a school trip.
-Hmm.
-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
-Hmm.
and to her tent
and I was balled my eyes out.
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.
And she hated it.
Ishaan started
his university in 2010.
He went off to the US.
So, this is the room. Room F!
And you can see
It's a luxury bed.
Kind of struggling.
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.
-Not now, please.
-Out.
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.
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.
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.
I had never seen Aisha
be like smitten with anyone like that.
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.
GOOD MORNING, FATTY
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.
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.
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.
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.
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.
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!
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.
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.
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."
Thank you.
-Thank you.
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.
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.
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.
So, I took the mic-key button out.
And uh guess what!
Her heart stabilized.
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.
Amazing!
And Aisha and I used to have
a lot of discussions about
sleeping with people.
And she would tell me, "How can you
be that close to somebody, you know."
Don't your
armpits smell?
"COME, LET US FIND HIM."
I would
like to call up Aisha Chaudhary
-to receive her certificate of attendance
from the American Embassy School.
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.
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.
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.
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.
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.
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?"
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.
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.
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.
She didn't even have the energy to
hold the canvas to paint.
She could no longer paint.
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.
And uh,
when she showed it to me
I think she had about
uh 30 30 quotes.
And she called them her epiphanies.
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.
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.
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.
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.
She had this incredible
sense of humor, Aisha!
So, she said to me,
"What's happened to Mum?"
Has she gone cuckoo?"
She said to me.
I said, "Yeah, Aisha, she hasn't slept."
And she rolled her eyes.
"She is a drama queen!"
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.
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.
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
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.
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.
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."
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.
We didn't we were not expecting
him to die. He was only three years old.
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.
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!
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."
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."
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
she would have preferred to be buried.
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.
She was just absolutely in pain.
It was so much emotional pain
and physical pain
because her body
would not allow her to cry.
And I remember
increasing the oxygen
and increasing the oxygen
and her saturation is falling.
And she was just screaming, screaming,
and howling.
And she kept
looking at me the whole time
and I knew what she was thinking.
I knew she was thinking
that this will be you, soon.
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
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?
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."
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."
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."
-Hi!
Hi!
Hi! Chips!
Hi! Hi!
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.
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
they may be on, so
I hope that's what will happen.
We were up really late
till like four or something
and I went to bed
and I woke up
uh, to Aisha coughing.
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
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.
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.
I had to be there
for her but not with her.
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."
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.
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.
She got up,
she took off her oxygen,
she gave me a kiss like
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?"
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.
Because somewhere
I think if I didn't believe
"Thou shalt not kill"
then none of this would have been
have happened to her.
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.
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.
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.
You okay?
I remember my earliest
memory was, uh, my third birthday.
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.
-Aishu!
-Hello!
-I think we're gonna miss
-What are you doing here?
-miss our train.
-No it's said just now,
-I am playing
-fifteen minutes left.
-with the snow. Whee!
-Whoo!
-It's fun! Mum!
-Mummy, it's snowing!
I know!
Aisha just happened.
She was the desire of the universe.
Yeah, after having been through something
as horrific as I went through with Tanya
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.
Had it not been for my faith,
I think any other sensible person
would have just aborted that child.
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 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
And you have
such conflicting emotions.
You feel like, "I hope she
won't feel cold."
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.
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.
Had it not been
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.
I used to be very
close to my brother.
And we used to play games and
-play in the park and--
It was quite normal from
what I remember. Hmm.
-Here you go!
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.
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.
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.
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--
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.
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.
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.
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.
So, they then proposed that they try the
first stem cell transplant
for Severe Combined Immune Deficiency.
I remember the doctors
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
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
the cells from the fetus to save Aisha.
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.
On
the 25th of March this year,
Aisha Chaudhary was born with
Severe Combined Immune Deficiency
known as SCID.
Aisha's parents have managed
to raise 60,000 pounds
from all their savings.
So,
the radio appeal goes out.
-Aisha's story touches the
hearts of a nation that is,
you know, not her own.
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.
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.
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!
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.
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.
I think Aisha's
life was saved because
of what we learnt Tanya's time.
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.
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.
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--"
"This is from Dad.
Make it work, make it work."
Come on, cells! Come on, cells!
-Come on, cells!
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!
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.
Come on, do
something for my son.
-Ishaan.
-What? Is he in there?
What's he doing inside
the video camera?
Well, hello!
Hey! We are going down
to see your sister now.
-Alright.
-Come on, let's go.
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.
-God bless you.
God bless you, Aisha darling.
God bless you, sweetheart.
Here, Ishaan, see.
This is Aisha darling.
Oh, no! She has taken her tube
out of her nose.
-Oh, my God!
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!
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.
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.
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.
I think the initial years uh
when I was working in Holland,
I was
working there Monday to Friday.
And then on the weekends,
I would come back home.
Aisha!
Oh!
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.
I remember Aditi was away
for some work
and I took Ishaan and Aisha for a holiday.
-Oh!
-Did you see that?
And we used to have a fight
every night, Aisha and me.
Every night and several
times during the day.
Aisha did you have a nice time?
Hmm.
Why?
-We played with the sand.
-No. Just
not right.
-Are you missing Mummy?
-Mm-hmm.
-Mm-hmm.
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
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.
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.
-Come on, Aisha!
-Yay!
Aisha has won!
-Yay! Well done, Aisha!
-Well done!
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.
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.
Aisha felt hurt very quickly
uh, because she really craved
uh friendships.
Peer relationships
always were hard for her.
Higher! Higher!
Higher! Higher!
And she's coming back.
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!"
-I was learning acting,
-Hmm.
I went to uh, um
I went to the LAMBDA School of
like, the drama school.
-Yeah.
-And then I used to do plays
-after school, so that was my interest
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.
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."
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.
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.
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.
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.
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.
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
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."
-Doggy?
-This is Kobe.
Say hi, Kobe! Hi!
Aisha and I decided that we
really wanted a labrador.
The minute we got there, he was
the first one to walk over
-and I was like, "He looks like a Kobe."
And she was like, "Yeah, he does."
This is my Kobe hug.
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.
Dogs
are delighted with a walk,
ecstatic with a small treat,
and in heaven
when you tickle their belly.
It got on you.
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.
-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."
-Woo-hoo!
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.
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.
I spoke to the doctors in India.
Most of them kind of said,
"Don't come back."
A family is made up of four people.
It cannot all and only be about Aisha.
Bye, Aisha! Bye!
-Thank you!
-Bye-bye.
-Hey, Aisha!
-Yeah?
Do you have anything to say?
Yeah, I'll miss everyone.
-Ow!
-Hey!
-Come on!
-Give me!
Whoo!
-Aisha, say "Happy Bhaiyya Duj"--
"Happy Bhaiya."
-Whatever!
-Eat it!
-Ah!
Alright!
Aw!
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.
I rushed her to the UK and
that's the first time we knew that
you know she had only
40 percent lung capacity.
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."
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."
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.
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
-Hmm.
your stomach, and then
it's attached to a tube.
-So um when I had to put that in
that was the most painful thing I have
ever experienced.
Because I have never
remembered having surgery
-so that was the first, you know like
-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.
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.
And Aisha
suddenly from one day to the other
was unable to walk.
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.
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.
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.
Oh, my God!
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.
I I am the one and only
Bob Marley!
-Yo!
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.
-And she has something called
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.
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.
That basically meant that you'll--
It's the hardening of the lung.
One of the things that causes it
can be chemotherapy.
It's irreversible, so, your
lungs just get harder
and harder and harder
that you can't breathe.
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."
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.
After that, we actually
reduced her time at school.
She was then going to school only half
time post that diagnosis.
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.
We went to
Rishikesh on a school trip.
-Hmm.
-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
-Hmm.
and to her tent
and I was balled my eyes out.
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.
And she hated it.
Ishaan started
his university in 2010.
He went off to the US.
So, this is the room. Room F!
And you can see
It's a luxury bed.
Kind of struggling.
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.
-Not now, please.
-Out.
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.
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.
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.
I had never seen Aisha
be like smitten with anyone like that.
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.
GOOD MORNING, FATTY
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.
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.
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.
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.
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.
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!
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.
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.
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."
Thank you.
-Thank you.
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.
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.
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.
So, I took the mic-key button out.
And uh guess what!
Her heart stabilized.
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.
Amazing!
And Aisha and I used to have
a lot of discussions about
sleeping with people.
And she would tell me, "How can you
be that close to somebody, you know."
Don't your
armpits smell?
"COME, LET US FIND HIM."
I would
like to call up Aisha Chaudhary
-to receive her certificate of attendance
from the American Embassy School.
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.
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.
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.
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.
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.
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?"
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.
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.
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.
She didn't even have the energy to
hold the canvas to paint.
She could no longer paint.
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.
And uh,
when she showed it to me
I think she had about
uh 30 30 quotes.
And she called them her epiphanies.
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.
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.
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.
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.
She had this incredible
sense of humor, Aisha!
So, she said to me,
"What's happened to Mum?"
Has she gone cuckoo?"
She said to me.
I said, "Yeah, Aisha, she hasn't slept."
And she rolled her eyes.
"She is a drama queen!"
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.
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.
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
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.
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.
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."
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.
We didn't we were not expecting
him to die. He was only three years old.
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.
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!
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."
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."
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
she would have preferred to be buried.
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.
She was just absolutely in pain.
It was so much emotional pain
and physical pain
because her body
would not allow her to cry.
And I remember
increasing the oxygen
and increasing the oxygen
and her saturation is falling.
And she was just screaming, screaming,
and howling.
And she kept
looking at me the whole time
and I knew what she was thinking.
I knew she was thinking
that this will be you, soon.
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
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?
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."
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."
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."
-Hi!
Hi!
Hi! Chips!
Hi! Hi!
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.
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
they may be on, so
I hope that's what will happen.
We were up really late
till like four or something
and I went to bed
and I woke up
uh, to Aisha coughing.
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
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.
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.
I had to be there
for her but not with her.
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."
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.
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.
She got up,
she took off her oxygen,
she gave me a kiss like
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?"
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.
Because somewhere
I think if I didn't believe
"Thou shalt not kill"
then none of this would have been
have happened to her.
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.
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.
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.