BLOOD RELATIVE TRANSCRIPT – THEATRICAL VERSION
Text:
Mumbai, India
Every year 10,000 children are born in India with Thalassemia, a genetic disease found throughout Asia.
Most will not reach the age of 25.
Imran:
My name is Imran Mohammad and I'm 24 years old.
I'm Muslim by religion and we follow Islam.
My dream is to go to United States and I want to meet Eminem, and I want to take some rapping lessons from him. [laughs]
[rapping]
Dear Slim, I wrote you but you still ain't calling I left my cell, my pager, and my home phone in the bottom I sent two letters back in autumn
You must not-a got 'em
There probably was a problem at the post office or somethin'
Imran’s Mother:
He always listens to Eminem CDs. All the time! I tell him it’s better if he prays, then he’ll get well.
Imran:
I like the way he rap, I like the way he talk, and I like the way he say I don't give a...[laughs]
Every week, I go to the hospital. I have Thalassemia Major.
My body doesn’t generate blood on its own.
So in order to survive you need to just take this transfusion.
Text:
Thalassemic children need weekly transfusions, which cause a fatal build up of iron.
To remove the iron overload they need drugs called iron chelation.
Otherwise their growth is permanently stunted leaving them trapped in the bodies of children.
[a young-looking boy] Age 15
[a young-looking girl] Age 18
Imran:
It is a question of life and death.
If you take your medicines regularly, then you live long, not only live long, live healthy.
But then I started taking iron chelation since the time I could afford it.
I am single right now, and there’s little hope of marriage.
The hormones are not growing, so you cannot see that moustache and beard.
Because I’m 24 years old, so generally guys of my age, they appear very tall.
They appear like men, but then I'm still, I still look like a little kid.
Text:
BLOOD RELATIVE
Mumbai’s Lifeline
Text:
Divya
Age 14
Divya:
When I was one year old I came to know I had Thalassemia. My mom takes me to the hospital.
[to Mother] Smile a little. [laughter]
My mom and dad don’t have money.
If I get medicine, good ones, then I can become healthier.
[pointing at vein] Take it here.
Nurse:
What’s wrong with your veins today?
The blood from the morning is still coming out.
Woman:
How many years have you been coming here?
Divya’s Mother:
10 years.
[about Woman] The boy who is being transfused inside is hers.
She has four kids with Thalassemia who need blood.
Having one child is so difficult. Imagine four kids with it.
[to Woman] They were 6, 12, and 2, right? [woman nods] Those 3 have died.
Divya:
It’s been hurting since morning.
Man:
Why didn’t you say?
Divya:
I told her.
Man:
Your hand could have swollen up.
Divya:
That nurse does it well.
Man:
So tell her to do it.
Divya:
This one’s feelings will get hurt.
[to Nurse] Sister, slow.
Nurse:
This will hurt you.
Divya’s Mother
I’m not wearing sandals because I have made a promise to God.
Until Divya doesn’t need blood, I won’t wear them.
[to Divya] We have to pray to our godess. She says this will all pass.
Text:
Parent Information Event
Man With Microphone:
From Think Foundation, vice president, Vinay Shetty.
[applause]
Vinay:
I’m not very good at Hindi.
But the situation is such that I would definitely like to say something.
Your child is a Thalassemia Major, which means, when you keep giving blood to the child, there’s going to be a build up of undesirable iron.
The iron will accumulate to such an extent, it will ultimately kill the child.
So today what’s happening is, parents who cannot afford the iron disposal, are actually letting their children die.
Text:
Vinay
Vinay:
My name is Vinay Shetty.
There is no president at Think Foundation. There's just me here. The vice president. [laughs]
Think Foundation is a non-profit organization, which works for the causes of all Thalassemic children.
How did I get into the field of Thalassemia?
Right from the time I was a little kid, I've been involved in all these activities.
It started off with seeing it as we did cancer, but when I met all the kids suffering from Thalassemia Major, then I realized there is no support coming for this particular disorder.
Somebody has to empathize and say, "Yes, this kid suffering. Let me do something about this."
I am single and my parents take good care of me actually. [chuckles]
Vinay’s Mother:
I have talked to him about marriage, but he doesn’t have any time to give to a wife. He’s always too busy with his work.
Vinay:
I pity the girl who marries me. [laughter]
Vinay’s Mother:
In his head, there is only Thalassemia and blood. That’s it. Nothing else.
Children who are sick, who live in helpless conditions, those are the children he wants to help.
Vinay:
Families who are affected by Thalassemia, they will be earning a salary of 6,000RS a month. How are they going to be able to pay 4,000RS for the iron chelator?
So they have no option but to depend on somebody else.
Divya:
My mom prays a lot to God. That I get better soon.
Text:
Spiritual Healer
Divya’s Mother:
There is a woman, who the Goddess uses to speak through. And she said if you believe in me, nothing will happen to her.
Goddess, whatever is bad let it disappear.
You are the only one who will help.
My daughter should be benefited Goddess.
[the Healer makes a noise]
Yes Goddess.
Goddess, nothing bad should happen.
[the Healer speaks in tongues]
Yes Mother. I have nothing except this promise in my life.
Mother whatever you’re doing will it help?
[the Healer speaks in tongues]
I’m doing this until we can stop giving her blood, and she becomes absolutely normal.
Text:
Sion Government Housing
Imran:
I work for a call center.
Now I can manage my medical expenses, I mean, on my own and then I'll have a little money to support my family.
Imran’s Mother:
Now only Imran takes care of us.
However he can. He goes to work, he doesn’t take time off.
Imran:
I have to take care of almost everything, from groceries to electricity, everything.
[holding picture] That's my mom. That's me and my sister.
We shot this in a studio.
My mom, she's the most important person in my life. My dad left because of my Thalassemia. I think I was 6 or 7 years old.
Sometimes my dad used to give us money for expenses but then not all the time. And then after a point it stopped so my mom had to take care of my medicines.
Whether he's alive or dead, I don't care. He's no more, for me, at least.
[to rickshaw driver] Thank you.
[to Vinay] Thank you.
Vinay:
Please sit down.
Imran:
Yeah, thanks.
Vinay:
I’ve known Imran for a very long time. He calls me Vinay Uncle. He’s like family really.
I would like to believe that if Imran needs anything, I should be there.
Imran:
Vinay Uncle?
Is it possible for me to get iron chelation at a subsidized rate?
Vinay:
Right now what price are you getting at?
Imran:
I used to get it from a friend. So she used to give me for 800 bucks. But then now she won’t be able to get, she said, “I won’t be able to,” I said, “ok, I’ll try from somewhere else.”
Vinay:
If you go to the West, there is a medical insurance system.
Imran:
I know, I know.
Vinay:
It’s only India that we have a problem. Because we don’t have an insurance system at all.
We’ll do a fundraising program for you. And everything will be done by us.
[voiceover] Right now there’s one individual supporting the foundation from the U.S., he’s the one who’s providing the money.
We are looking at 200 children being supported by us.
What's your name? Momud? What’s your blood group?
Momud:
AB Positive.
Vinay:
Good boy.
Think staff member:
I don’t think anybody in the world work like Vinay.
Text:
Think Staff
Think staff Member:
He's really a gem of a person. There’s no selfishness in him.
15 years back there was a shortage of blood.
I’m a parent of Thalassemia Major child, so I requested Vinay if he can donate blood for my child. He said definitely, and he went and donated blood.
And from that day, we are together. We are working for Thalassemia.
Thalassemia Major Child:
I think he’s the father of all Thalassemia Major children in Mumbai. And because of him I’m surviving.
Think Staff Member:
Vinay, there is a child in St. George hospital, she’s called Divya. She is receiving blood transfusions be she has not, started any iron chelation.
Vinay:
If the child is 15, 16 years of age, and has not received iron chelation until now, then, I'm, I'm scared. Let’s go meet the parents, let’s find out what the problem is.
Think staff Member:
Hi! Hi.
Vinay:
Sit, sit, sit, sit.
[to Mother] How often does she get transfusions?
Divya’s Mother:
Every 11 days.
Vinay:
She is getting transfusions, but what about the iron medication?
Divya’s Father
No. Nothing.
Divya’s Mother:
Next month is her 15th birthday. Because of God, Divya has lived to be 14, without taking any medication.
Vinay:
Sure, God’s mercy is there, and we want her to grow up and do good things. But we can’t leave everything to God. We must do things too. Blood is one part of it. But the iron tablets are very important.
It’s important you start.
And if you need anything, our foundation is here.
If you look at it, this is our family. We are a Thalassemia family. If you need anything, do not hesitate to ask.
Don’t worry about the treatment. We’ll give you support.
Divya’s Mother:
We want Divya to get married into a good family. And this illness should end soon. This is what I want for her.
Imran:
Around 8:30 I got a call from a friend saying that one of our friends passed away because of iron overload. She was of my age. And then she passed away, Friday night.
Even my iron level is pretty high.
So that was a bit scary.
I would definitely love to live longer, especially for my mom and my sister. With my mom, her health is just declining. That's one thing I'm a little worried about.
So I have to live at least for them.
Text:
Think Foundation Offices
Vinay:
So you write, the Honourable Shri Suresh Shetty. Minister for Health and Family Affairs.
We have written to the government, of course. Saying that the iron celation should be given free to all Thalassemic children.
There is Thalassemia in London. There is Thalassemia in the U.S. also. What happens to those Thalassemia children? They get the best of treatment.
If the Health Minister agrees to my proposal, all children suffering from Thalassemia Major, will get the iron chelation free.
Text:
Suresh Shetty
Health Minister
Suresh:
It's not that I wanted to become Health Minister. My party and my leaders, uh, gave me the portfolio so I have to handle it successfully.
Text:
Grand opening of grocery store
Suresh:
Thalassemia is a very age-old problem, it's nothing new. It has been remaining in this planet Earth for quite some time.
There are a lot of patients, especially children, who are below the poverty line.
Divya:
My friends, they are younger than me.
[to children] Come! Let’s go!
[to Girl] How old are you?
Girl:
Six.
Divya:
Six.
Girl:
How old are you?
Divya:
I am fifteen.
Divya’s Mother:
My Divya doesn’t look like other kids.
Text:
Sion Hospital
Doctor:
Divya? I’m going to see you now. How are you?
[interview] She was referred by, uh Mr. Vinay Shetty who's a good friend, and he's working with Think Foundation. I'm glad she reached us.
[to Divya] Do you have any problems now? Do you have any pains?
Divya:
My whole head hurts.
Doctor:
Your whole head?
Now take deep breaths.
[to Mother] She started chelation too late. She should have been chelated from the age of three and a half.
All this is iron pigmentation.
[interview] If you give only blood transfusions to a Thalassemic and no chelation, they won't survive beyond 12, 13, 14 years of age. Like middle of the second decade they would probably die because of the iron overload in the heart.
[to Mother] Do you know the problems she has because she did not get medicine?
Divya’s Mother:
No, I don’t know.
Doctor:
Nobody explained?
Divya’s Mother:
No, nobody.
Doctor:
The iron medication is so important. In the brain there is something called the pituatory gland, if iron gathers there they won’t grow in height.
When girls reach 13, 14, they get their periods. In other ways they grow, that will not happen to her.
Did you ever talk to the doctor about this?
Divya’s Mother:
No.
Recently we started taking this medicine.
Doctor:
Which one?
Divya’s Mother:
I couldn’t afford this.
Doctor:
So Vinay is giving this to you?
Divya’s Mother:
Yes.
Doctor:
Then don’t worry. Ok?
If you give this medicine, the excess iron in her body will come down.
Vinay:
If the iron overload is taken care of then straight away you can add another 15,
10 to 15 years to the life of a Thalassemia Major child.
Imran:
Mom, I kept a needle here.
Imran’s Mother:
[muffled]
Imran:
Why did you move it?
Imran’s Mother:
No, it was out, so I kept it here.
What is it?
Imran:
Needle.
Imran’s Mother:
Here. This is it, right?
Imran:
Yeah.
I take this 5 times in a week. It’s a drug to remove iron from the body.
Boy:
What are you doing?
Imran:
Babu, I have to take my injection.
Boy:
What’s happened?
Imran:
I’m taking my injection, little one.
[indistinct conversation]
Imran
He's my friend, we were in school together. I’m elder to him by 2 years.
Imran’s Friend:
One year.
Imran:
Two.
Imran’s Friend:
But I am still taller than him. [laughter]
Imran:
How much time did it take for you to do MBA?
Imran’s Friend:
Two years.
Imran:
Two years. And how did you pay for the… uh, what was the course fee?
Imran’s friend:
5 Lakhs
Imran:
5 Lakhs for the course fee? You paid 5 Lakhs?
Imran’s Friend:
Yeah.
Imran:
Rich man, you are. [laughs]
Do you have a girl yet, or are you still single?
Imran’s friend:
When would I have the time? I have to work by 8.
When are you planning to marry?
Imran:
I don't know, I'm actually, I don’t- I'm not sure if I'm planning or not.
Imran’s Friend
Why?
Imran:
You know it's not, it's not gonna be easy.
Imran’s Friend:
Why don’t you go in for a Thalassemic girl? Because she might understand you better.
Imran
Actually, you know what, I mean- there's one girl in my hospital, I mean I like her, but then I'm not sure if she's gonna say yes or no. And we're just friends. I mean, if I feel that the time is correct now, then I'll probably go and propose her. If it works, then great.
[indistinct conversation]
Vinay:
The Health Minister, he was organizing this green walkathon.
We still haven’t met. So I’m hoping to meet him now, and find out what’s the status of the proposal.
Text:
Walkathon For The Environment
Vinay:
He is the Health Minister. His approval is required for everything.
Health Minister:
Go, go, go!
Organiser:
Keep walking, keep walking. Keep walking, keep walking.
[mingled voices]
Vinay:
When the Minister came, I had an opportunity to meet him.
And he has already said yes, we will provide the medication to all the 5,000 children in Maharastra.
But now to translate that into action on the ground. It's the worry that I have, how long will it take?
Health Minister:
As far as Thalassemia is concerned, there has been a slow revolution taking place in this country.
We are in the process of formulating a policy where the State can provide this medicine to Thalassemia patients free of cost, uh, by the government. We are still in the process of finalizing this.
Divya’s Mother:
Divya! Divya! Come, sit down.
Divya’s Father:
Where’s my hot water?
Divya:
I told you already.
Divya’s Mother:
Did you get your paycheck?
Divya’s Father:
No.
Divya’s Mother:
How long can we last? We don’t even have milk.
Divya’s Father:
Why don’t you get it from that store?
Divya’s Mother:
We haven’t paid him, I’m embarrassed to ask for more.
Divya’s Father:
So? We’re going to pay him.
Divya’s Mother:
What about her school fees?
Divya:
The teacher is bugging me about fees.
Divya’s Mother:
They keep asking.
Divya’s Father:
One more day, I get paid tomorrow. I’ll give you the fees then.
Divya’s Mother:
[to Divya] So don’t go tomorrow.
We needed to give 5 rupees to the potato guy. It’s difficult to go out because of 5 rupees.
Divya’s Father:
We don’t want to keep his 5 rupees. We’re not like our neighbours.
Divya:
My brother’s name is Jayesh. He’s older.
Jayesh:
I left school when I was 16. Divya really likes school.
Divya:
When I get older I would like to become a teacher.
Divya’s Mother:
Jayesh is going to get married. He’s going to have a love marriage.
We’ve not fixed a date, but it’s next month.
Jayesh:
I don’t want my kids to have Thalassemia Major.
Vinay
Divya is a Thalassemia Major only because the two parents did not know that they were Thalassemia Minor. Anybody in this country can be Thalassemia Minor. Anybody in the world can be a Thalassemia Minor.
If you look at the Indian population, an estimated 40 million Indians are Thalassemia Minor.
Do you know if your son is Thalassemia Minor or not?
Divya’s Father:
No.
Vinay:
Because you and your wife are Thalassemia Minor, that is why Divya is Thalassemia Major.
Your son, he is either normal, or Minor. Do you know whether he’s normal or minor?
Divya’s Father:
No. He’s never been tested.
Vinay:
So he needs to be tested.
Marriage will happen and his children shouldn’t have any problems.
Jayesh:
My mom said they’re going to test me.
Doctor:
What’s your name?
Jayesh:
Jayesh.
Doctor:
Your full name?
Jayesh:
Jayesh Chauhan. Jayesh.
Doctor:
Close your fist.
Jayesh:
This is an injection? I’m scared of injections.
Doctor:
You won’t even feel it.
Divya’s mother:
There’s a nice vein!
Don’t look! Just close your eyes.
Doctor:
It’s over. It’s done.
Divya’s Mother:
You have to give me a report for this.
[indistinct talking]
Divya’s Mother:
How are the boys at your school?
Divya:
They’re all useless.
Divya’s Mother:
How are your friends?
Divya:
They’re not good.
Divya’s Mother:
Not good? Are they girls?
Divya:
Yes.
Divya’s Mother:
They’re not calling you? Are they mean to you?
Divya:
Yes
Divya’s Mother:
Educating you, is a waste of time. What will you learn about your household duties? If you learn house work, then I can look for a job outside. Then at night, I will only have to cook. Otherwise, it’s on my head to clean and cook.
Divya:
If I didn’t have Thalassemia, then like other kids, I could study hard, and I could become someone.
Imran:
Jeez, the lights are off!? Oh my God, shit. Uh… Now when will the light come back on? Had to cut out on a Sunday.
Imran’s Mother:
There’s no light in that building too. That one, that building.
Imran:
But the front one has.
Imran’s Mother:
The one on the other side doesn’t.
Allah! [sighs]
Imran:
Yeah, it happens quite often. Sometimes, you know, there's no electricity in the entire area, sometimes only in this building, sometimes only on this floor. It's quite unpredictable and
it generally happens on Sunday, when you have a weekly off, to screw your day! [coughs]
When will the light come on?
Vinay’s Sister:
There is no night or day for him.
Text:
Vinay’s Sister
Vinay’s Sister:
Anytime is work time for him. He feels like he has no time for anything. A total workaholic. [laughs] That’s the way it is. He believes that, I think, uh, hands that help are holier than lips that pray.
When you look at him you feel this a real example of that.
[cell phone rings]
Vinay
Hello.
Yeah, yeah, Vinay Shetty, what is it?
Text:
Vinay receives a call from his sole sponsor in the US.
He is told that because of the recession they are cutting all support to Think Foundation.
Vinay
We are in big trouble. The plan is to move to this, uh, this small office. We’re trying to keep it to the bare minimum, because we know that we don’t have the money right now.
I cannot afford to cut the salaries of the others. The only salary that can take a beating is mine. So I have to take a cut on my salary.
There’s hardly anybody there in the office.
[conversation in Marathi]
Text:
Think Staff
Think Staff Member:
Alright, shall we go?
I wanted to talk about something.
Vinay:
Hm?
Think Staff Member:
I wanted to talk to you about something.
Vinay:
You can talk.
Think Staff Member:
We can talk tomorrow.
Vinay:
What’s the matter?
Think Staff Member:
It’s about a job.
Vinay:
Uh-huh.
Think Staff member:
I’ve got a job offer, and I’m wondering if I should take it.
Vinay:
If it’s a good job and steady work, I won’t ask you not to take it.
Think Staff member:
I have problems now. I have to put my child through school.
Raise my salary by 2,000RS and I could have stayed.
Vinay:
When do you start?
Think Staff Member:
On the 1st.
Vinay:
But everyone is on holidays now.
It is tough times really. I cannot think of Think Foundation closing.
If that happens then, I’ll blame myself. I’ll say I have not put in the right amount of effort.
[indistinct talk]
Text:
Vinay’s Mom
Vinay:
This office feels very claustrophobic, there’s no space.
Vinay’s Mother:
What if they increase the rent later?
Vinay:
They won’t increase the rent, the whole building is for NGOs.
Vinay’s Mother:
Are you paying your staff on time?
Vinay:
The staff is getting paid.
I’m doing all the work I can for the minister to make his decision easier.
If the government agrees, then in one stroke, they can take care of 5,000 kids in our state. But they are taking their time, so we have to find individual sponsors.
Vinay’s Mother:
Oh my God.
Vinay:
It will be difficult for a while.
Vinay’s Father:
Are you generating any income?
Vinay:
I am with Think Foundation. Papa now you forget that. We will talk about that later. Right now there is something – you just stay out of it. Just don’t say anything.
[muffled voices]
Vinay’s Mother:
As long as I’m still here, everything will be fine. I will take care of him. As long as he is happy, that’s all I want.
Vinay:
Hello? Jayesh is there right? -When will he get up?
Jayesh:
Divya is still sleeping? Let her sleep.
Vinay:
The report is here. Just as I thought, he is Thalassemia Minor. There is no need to worry, but you must keep one thing in mind, when you get married, whichever girl you marry should be tested. Can you tell me what you understood?
Jayesh:
I don’t understand.
Vinay:
Listen. Do you have to do anything?
Divya’s Mother:
Do we need to start medicine?
Vinay:
No, nothing.
Jayesh. Mom forgets or Dad forgets, everyone forgets, you remember. When I get married, I have to get my partner tested. There’s only one thing you have to do.
Divya’s Mother:
I don’t believe in Major or Minor carriers. You cannot erase what is written in your fate. Whatever is meant to happen, will happen.
Some people have good luck, and this was my luck.
[cell phone beeps]
Vinay:
What's happening today is I just got a call from the Minister’s office, to discuss the proposal that I’ve given to them. About the iron chelation drug, being given free to all Thalassemic children.
And if that is being provided to all the children, it’s going to be huge.
Sign: Cultural Event Sponsored by Suresh Shetty
Suresh:
How’s the website?
Man at Meeting:
I have only one – I want to block the, uh, Suresh Shetty dot com.
Suresh:
How’s everything else?
Vinay:
We have this program for the Thalassemic children.
We're having a workshop at Bhutan hospital for Thalassemia children as for the treatment aspect.
Suresh:
Anything else?
Vinay:
The iron chelation is the, big difference maker actually as far as Thalassemia is concerned. Because that’s – 95% of the problem will get solved with that one thing.
The only thing. I'll keep you briefed about everything.
[mingled voices]
Suresh:
Give him some more election posters and stickers.
Staff member:
The little stickers, yeah?
Man at meeting:
What is the event about?
[mingled voices]
[thunder rumbles]
Text:
A few weeks later Vinay is told that his proposal is not moving forward.
[rain patters]
[traffic noise]
Text:
Think Foundation
(New Location)
Think Staff Member:
[on phone] Is this Divya’s Mom? We have tried calling you so many times! We can never reach you.
[to Vinay] Yeah Sir, you know what’s happening with Divya, Divya has actually skipped her medicine quite a bit. So I don’t know who to send and…
Vinay:
What I’ll do is I’ll leave 10,000RS with you. So you can send him tomorrow, let him get the medicines.
[indistinct conversation]
Think Staff Member:
Divya’s brother, right? Come in, come.
Have you been giving her the medicine?
Jayesh:
It ran out.
Think Staff Member:
How long ago did it get over?
Jayesh:
I don’t know when. [to friend] Sign for it.
Sign it.
Think Staff Member:
Divya.
Jayesh’s Friend:
How do you spell Divya?
Jayesh:
Divya is spelt D-A-Y-E…
Jayesh’s Friend:
How do you spell Divya?
Think Staff Member:
D-I-V-Y-A
Jayesh:
I don’t know much.
Jayesh’s Friend:
D-
Think Staff Member:
I-V-Y-A
Jayesh’s Friend:
That’s it, let’s go.
Think Staff Member:
Please give it to her every day, and call us when it runs out. Then you can pick up more from here. Ok, this is only enough for one month.
Now it’s been quite a while since she’s taken it. Ok?
Jayesh:
Ok I’ll let the know.
Divya’s Mother:
When I go to buy things I always say that she has this problem. Give us a discount. So they give.
So she screams at me why do you say that all the time?
Divya:
No one should know. I don’t like it.
Divya’s Mother:
When she dies they’ll know she had this illness.
Even if she’s dying, she’s happy.
Text:
St. George’s Hospital
Vinay:
These are all multiple transfused kids. They keep receiving transfusions throughout their lives. Therefore, the worry of safe blood is a very serious concern to all Thalassemic children.
Imran:
Should I check it?
Doctor:
Go ahead.
Vinay:
What’s the point in giving blood to anybody if it carries a virus?
Imran:
I mean, it was just a routine blood test I had gone for. Then I went to a doctor. I showed him the reports then he said, “you’re infected with Hepatitis C virus.”
I really get scared when I just think about it.
You know, this adds to our problem. If it was HIV positive, oh my God I don't know what I would've done- I would've probably committed a suicide for sure, because I don't wanna die slowly.
We’re going to meet a specialist today. Vinay Uncle had actually made arrangements for this meeting, because the doctor’s generally very busy.
Text:
Dr. Abba Nagral
Dr. Nagral:
Yeah, now see basically this is a virus, which is, in our country, most commonly transmitted by blood. Um, this is clear only in about 15 to 20 percent of patients. So 80% would continue to have it in their body, it would stay back in the liver, start multiplying in the liver and slowly damage the liver.
Imran:
I've got friends who've got Hepatitis C and - just talking to them and I found out that the side effects of this injection are very severe.
Dr. Nagral:
It's an expensive drug and it's a drug which has side effects. You can have body ache, fever, headache. You could even feel depressed.
But at this point in time I want to tell you that even when we give you this drug, uh, it's not 100 percent response to the drug. But in patients with Thalassemia it's a little lower because you have excess iron in the liver because of the blood transfusions, and that makes the response not as good.
Imran:
How about, what about the cost? I mean, and how much it's going to cost me?
Dr. Nagral:
It will come to around 4.5 – 5 lakhs for 6 months.
Imran:
Just curious, I mean, somehow if I'm not able to get this treatment done, is it going to be fatal because you're talking about cirrhosis in the liver, so?
Dr. Nagral:
Yeah, it is. I mean going to, the liver is going to get scarred over a period of time.
Imran:
Gets scarred.
Dr. Nagral:
It's scarred and shrunken and once it gets scarred, the liver functions start deteriorating and you start getting complications of liver disease.
Imran:
That means it's going to kill you but slowly. This liver thing is a little scary, no?
Dr. Nagral:
I think one has to be sure about the finances. You don't want to start it and then realize that you cannot afford it and you know, discontinue and have a gap. We would not recommend that.
Vinay:
Imran, I need to chat with her a little more, okay?
Imran:
Yeah, sure, thank you, doctor.
Dr. Nagral:
Okay, bye.
Vinay:
Yeah, so what is the urgency actually? I mean...
Dr. Nagral:
No, I would say it's not desperate but yeah, the earlier we start it the better.
Vinay:
It’s going to be difficult for me to raise the money.
But, we will raise the money somehow.
If I put pressure on myself, then I’m sure I’ll get the money from somewhere.
That is sadly speaking, the way I- you know- operate, actually. So I’ve decided that we’ll start.
Imran:
Not only it affects the liver but then the treatment is very expensive.
Vinay:
Let me do all the worrying. You know, don’t worry about the money that is required for getting medicines.
Text:
Festival For Goddess Durga
Divya’s Mother:
We invite the Goddess into our home for 10 days, and worship her twice a day.
Woman:
You’re slim and the saree’s big. Hold this!
Divya:
Am I thin?
Woman:
No! You’re fat!
Divya:
I like sarees very much.
Woman:
Pull up those pleats.
Fold it rather than raising it. Do that.
Divya:
Why fold it? Raise it!
Woman:
You don’t understand things.
Divya:
Put on the eyeliner too.
Woman:
Yes.
Open your eyes. Go put the bindi on.
Divya’s Mother:
Take a photo on your cell phone.
Stand like this and with your hands like this. Smile, don’t make that face.
You’ve got your face very high up.
Man:
What’s happening with the medicines? What has the government said?
Vinay:
We have tried a lot to get the government involved. It will definitely get done. But it has been delayed.
Man:
Everybody knows about AIDS. But nobody knows about Thalassemia.
Vinay:
These are such educated people, but they don’t feel this is important.
[indistinct chatter]
Vinay:
I told you about the proposal we had given the government.
And you know, the initial reaction was so positive. They said "Okay, yes, now there's a solution to the problem of Thalassemia and the iron overload part."
Text:
Vinay’s Sister
Vinay:
Though it's not gonna happen as fast as I expected it to happen. In the meantime, there are all these children who are Thalassemia Major and have got an iron overload problem.
And you know, the stress is there for you to see, you know.
Vinay’s Sister:
In your case, it is charity begins at home. That's how you start and then it goes on.
Vinay:
If you ask me, charity always begins at home really. If you're not willing to put your hand in your own pocket, you have no right to ask anybody else.
Vinay’s Sister:
Ask somebody else. So are you worried now?
Vinay:
Right now the situation is pretty desperate.
Vinay’s Sister:
I feel that Vinay's name is definitely there on top of God's list.
And um... One sec.
Anybody talks about Vinay, it always ends up like this [sniffs] 'cause he does so much for everyone. And look what has happened to his life. He's all alone.
Text:
Vinay finds a sponsor to pay for half of Imran’s treatment.
The other half he pays out of his life savings.
Imran:
My health, it’s not that great. [coughs] I’ve had this cough for a month now. I just cannot speak. Because of this treatment, I’ve lost like 4kgs. Every week I have to take this injection.
[to Mother] What do you think of all of this?
Imran’s Mother:
My boy goes through so much pain. He has to take so many injections. So much medicine.
It hurts me.
When will he get better?
[to Vinay] I don’t want wealth, anything. I only want my son to get better. That is whay I pray to god for Imran.
What else does a mother need?
Vinay:
Now he’s taking his medicines. Things will work out.
Imran’s Mother:
But I am alone in this.
Vinay:
Ah! Do not worry, we are here with you.
Divya’s Mother:
Don’t throw it in there! Wash it!
Divya’s Father:
Did you make tea?
Divya:
Yeah I have to strain it!
Divya’s Mother:
Divya, throw away the garbage.
[indistinct chatter]
Divya:
I get sad when I see the other kids who get to go to school.
I want to live a long, full life.
Vinay:
Divya are you taking your medicines? Even if mommy forgets, remind her.
Divya’s Mother:
She has not been going to school for six months.
Vinay:
Don’t stop her education. In India we feel this is a fatal disease. This is not a fatal disease. These Thalassemia children are like other children. They also have hopes like other children.
Whatever your son can do Divya can do the same.
You just have to transfuse blood regularly, and if you take this tablet regularly, she can be anything she wants.
Give Divya your full support, to achieve her dreams. We have to consider what will Divya’s future be?
Dr. Nagral:
So no, the virus is not responding as well as we would expect. If you're still positive at three months we may need to give you the injections a little longer.
Imran:
Little longer means?
Dr. Nagral:
Another three months or another six months also sometimes.
Imran:
Oh, that’s long.
Dr. Nagral:
Yeah, yeah, let's see.
Text:
Imran’s Sister
[indistinct chatter]
Imran:
I used to take care of my sister, her tuition fees, books and then pocket money. Now she realizes that I have to take care of my medical bills and other stuff also, so, she got a job and she’s taking care of her expenses.
[to Sister] What are your university fees?
Imran’s Sister:
4500RS.
Imran:
For the whole year?
Imran’s Sister:
For the whole year.
Imran:
What are the fees for the tutorials? I’ll have to call someone for private home sessions.
Imran’s Sister:
He said 20,000 for a month.
Imran:
Has he gone crazy!? 20,000 per month!
People don’t even earn 20,000!
Imran’s Sister:
No doubt they guarantee you’ll pass if they take 20,000 a month. You have to study throughout the year.
Imran:
If you bribe you will pass. [laughs]
Today, I’m going to meet my friend.
To go out with, I would say a girl should have a good sense of humour. Should have brains, not just beauty. That’s it.
She’s Thalassemic Major. We’re in the same hospital. She’s fun.
Vinay:
I have decided that I’m not going to wait for the Health Minister. I’ve started approaching individuals and organizations. Some of them have sent us checks already…
And if we get a thousand such people we’ve taken care of a thousand children.
So thank you very much. I'll be back, yeah.
Man:
Deliver it to me.
Vinay:
Yeah, sure.
All Thalassemic children are an important part of my life.
Knowing Imran, I feel that he’ll come out of this.
[to Imran] Hi, Imran.
Imran:
Hi, Vinay Uncle, hi.
Vinay:
How are you?
Imran:
I'm good, how are you?
Vinay:
Good, good. I'm very good.
Imran:
Sit, sit.
Vinay:
What happened?
Imran:
She had a stress fracture. So we got this plastered.
Vinay:
Oh my God. It’s a forced rest. [laughter]
So, how are you, yeah?
Imran:
My last trip out, it was not great. I mean, now only five injections are left so that means a month is left. But if the report is not good, then, uh, we might have to do it for a little longer.
Vinay:
Even if it means another six months, we’re gonna - we'll do that. What I mean is, why did we do all this?
Imran:
Yeah.
Vinay:
To see that your Hepatitis C problem is solved.
Imran:
Sure.
Vinay:
So we need to do whatever is required to be done.
Imran:
Now, when I'm gone for transfusion last Monday, there were two new patients, brother and sister. Now, I mean, first when I saw them they were, I mean, the kids were dressed very shabby. The mom, she said, "My husband and my relatives, they're like, 'why are you even taking them for blood transfusion?' Just leave them as it is.'"
Their mom is the only earning member, so she said, “my monthly income it’s only 2,000RS, I can afford treatment for only one of them so I'm doing it for my son. For my daughter, we'll see."
So...
Vinay:
We can try and give her the iron chelation.
Imran:
Shall I get the details?
Vinay:
Just pass them on to me.
Imran:
Yeah, and I'll definitely let you know.
Vinay:
Good, good. So, it's like almost nine o'clock.
Imran:
Yeah, I leave in ten minutes and then- Do you know where Bombay Hospital is?
Vinay:
I can drop you there at Bombay hospital.
Imran:
You can?
Vinay:
[to Mother] So I’m going the same way so I’ll drop him there. [chuckles]
Imran’s Mother:
You’ve become like family. Thank You for your help.
Vinay:
You don’t have to worry. Shall we leave.
Imran:
I’ll be back in a bit.
Vinay:
Think Foundation is here to stay, as far as I’m concerned. Tomorrow somebody will say that what you have left in the bank is one rupee, even in that state I will say no, Think Foundation is here to stay. Because we feel that they’re our kids.
[indistinct chatter]
Imran:
Actually, I'm not worried because, I mean there's no point in worrying. I mean, it will, it will not help you so why to worry. Just work on it and things will be all right.
Interviewer:
You sound like Vinay Uncle.
Imran:
[laughs] That's actually a compliment.
Vinay:
I don’t know what’s going to happen tomorrow, day after tomorrow, that’s the fact of the matter, but I’m not going to give up. I need to take care of my family.
Imran:
Thank you, Vinay Uncle.
Vinay:
One step at a time. One day at a time.
Text:
Divya’s health is improving but her parents have taken her out of school.
Imran still struggles with his Hep C and continues to take treatment.
He helped create the Youth Thalassemic Alliance, a support group for patients in Mumbai.
Vinay continues to run Think Foundation with new sponsors and a small, but dedicated team.
With over 200 million carriers, Thalassemia is the most common genetic disease in the world.
To get involved join the movement at BloodRelative.Org
Text:
Mumbai, India
Every year 10,000 children are born in India with Thalassemia, a genetic disease found throughout Asia.
Most will not reach the age of 25.
Imran:
My name is Imran Mohammad and I'm 24 years old.
I'm Muslim by religion and we follow Islam.
My dream is to go to United States and I want to meet Eminem, and I want to take some rapping lessons from him. [laughs]
[rapping]
Dear Slim, I wrote you but you still ain't calling I left my cell, my pager, and my home phone in the bottom I sent two letters back in autumn
You must not-a got 'em
There probably was a problem at the post office or somethin'
Imran’s Mother:
He always listens to Eminem CDs. All the time! I tell him it’s better if he prays, then he’ll get well.
Imran:
I like the way he rap, I like the way he talk, and I like the way he say I don't give a...[laughs]
Every week, I go to the hospital. I have Thalassemia Major.
My body doesn’t generate blood on its own.
So in order to survive you need to just take this transfusion.
Text:
Thalassemic children need weekly transfusions, which cause a fatal build up of iron.
To remove the iron overload they need drugs called iron chelation.
Otherwise their growth is permanently stunted leaving them trapped in the bodies of children.
[a young-looking boy] Age 15
[a young-looking girl] Age 18
Imran:
It is a question of life and death.
If you take your medicines regularly, then you live long, not only live long, live healthy.
But then I started taking iron chelation since the time I could afford it.
I am single right now, and there’s little hope of marriage.
The hormones are not growing, so you cannot see that moustache and beard.
Because I’m 24 years old, so generally guys of my age, they appear very tall.
They appear like men, but then I'm still, I still look like a little kid.
Text:
BLOOD RELATIVE
Mumbai’s Lifeline
Text:
Divya
Age 14
Divya:
When I was one year old I came to know I had Thalassemia. My mom takes me to the hospital.
[to Mother] Smile a little. [laughter]
My mom and dad don’t have money.
If I get medicine, good ones, then I can become healthier.
[pointing at vein] Take it here.
Nurse:
What’s wrong with your veins today?
The blood from the morning is still coming out.
Woman:
How many years have you been coming here?
Divya’s Mother:
10 years.
[about Woman] The boy who is being transfused inside is hers.
She has four kids with Thalassemia who need blood.
Having one child is so difficult. Imagine four kids with it.
[to Woman] They were 6, 12, and 2, right? [woman nods] Those 3 have died.
Divya:
It’s been hurting since morning.
Man:
Why didn’t you say?
Divya:
I told her.
Man:
Your hand could have swollen up.
Divya:
That nurse does it well.
Man:
So tell her to do it.
Divya:
This one’s feelings will get hurt.
[to Nurse] Sister, slow.
Nurse:
This will hurt you.
Divya’s Mother
I’m not wearing sandals because I have made a promise to God.
Until Divya doesn’t need blood, I won’t wear them.
[to Divya] We have to pray to our godess. She says this will all pass.
Text:
Parent Information Event
Man With Microphone:
From Think Foundation, vice president, Vinay Shetty.
[applause]
Vinay:
I’m not very good at Hindi.
But the situation is such that I would definitely like to say something.
Your child is a Thalassemia Major, which means, when you keep giving blood to the child, there’s going to be a build up of undesirable iron.
The iron will accumulate to such an extent, it will ultimately kill the child.
So today what’s happening is, parents who cannot afford the iron disposal, are actually letting their children die.
Text:
Vinay
Vinay:
My name is Vinay Shetty.
There is no president at Think Foundation. There's just me here. The vice president. [laughs]
Think Foundation is a non-profit organization, which works for the causes of all Thalassemic children.
How did I get into the field of Thalassemia?
Right from the time I was a little kid, I've been involved in all these activities.
It started off with seeing it as we did cancer, but when I met all the kids suffering from Thalassemia Major, then I realized there is no support coming for this particular disorder.
Somebody has to empathize and say, "Yes, this kid suffering. Let me do something about this."
I am single and my parents take good care of me actually. [chuckles]
Vinay’s Mother:
I have talked to him about marriage, but he doesn’t have any time to give to a wife. He’s always too busy with his work.
Vinay:
I pity the girl who marries me. [laughter]
Vinay’s Mother:
In his head, there is only Thalassemia and blood. That’s it. Nothing else.
Children who are sick, who live in helpless conditions, those are the children he wants to help.
Vinay:
Families who are affected by Thalassemia, they will be earning a salary of 6,000RS a month. How are they going to be able to pay 4,000RS for the iron chelator?
So they have no option but to depend on somebody else.
Divya:
My mom prays a lot to God. That I get better soon.
Text:
Spiritual Healer
Divya’s Mother:
There is a woman, who the Goddess uses to speak through. And she said if you believe in me, nothing will happen to her.
Goddess, whatever is bad let it disappear.
You are the only one who will help.
My daughter should be benefited Goddess.
[the Healer makes a noise]
Yes Goddess.
Goddess, nothing bad should happen.
[the Healer speaks in tongues]
Yes Mother. I have nothing except this promise in my life.
Mother whatever you’re doing will it help?
[the Healer speaks in tongues]
I’m doing this until we can stop giving her blood, and she becomes absolutely normal.
Text:
Sion Government Housing
Imran:
I work for a call center.
Now I can manage my medical expenses, I mean, on my own and then I'll have a little money to support my family.
Imran’s Mother:
Now only Imran takes care of us.
However he can. He goes to work, he doesn’t take time off.
Imran:
I have to take care of almost everything, from groceries to electricity, everything.
[holding picture] That's my mom. That's me and my sister.
We shot this in a studio.
My mom, she's the most important person in my life. My dad left because of my Thalassemia. I think I was 6 or 7 years old.
Sometimes my dad used to give us money for expenses but then not all the time. And then after a point it stopped so my mom had to take care of my medicines.
Whether he's alive or dead, I don't care. He's no more, for me, at least.
[to rickshaw driver] Thank you.
[to Vinay] Thank you.
Vinay:
Please sit down.
Imran:
Yeah, thanks.
Vinay:
I’ve known Imran for a very long time. He calls me Vinay Uncle. He’s like family really.
I would like to believe that if Imran needs anything, I should be there.
Imran:
Vinay Uncle?
Is it possible for me to get iron chelation at a subsidized rate?
Vinay:
Right now what price are you getting at?
Imran:
I used to get it from a friend. So she used to give me for 800 bucks. But then now she won’t be able to get, she said, “I won’t be able to,” I said, “ok, I’ll try from somewhere else.”
Vinay:
If you go to the West, there is a medical insurance system.
Imran:
I know, I know.
Vinay:
It’s only India that we have a problem. Because we don’t have an insurance system at all.
We’ll do a fundraising program for you. And everything will be done by us.
[voiceover] Right now there’s one individual supporting the foundation from the U.S., he’s the one who’s providing the money.
We are looking at 200 children being supported by us.
What's your name? Momud? What’s your blood group?
Momud:
AB Positive.
Vinay:
Good boy.
Think staff member:
I don’t think anybody in the world work like Vinay.
Text:
Think Staff
Think staff Member:
He's really a gem of a person. There’s no selfishness in him.
15 years back there was a shortage of blood.
I’m a parent of Thalassemia Major child, so I requested Vinay if he can donate blood for my child. He said definitely, and he went and donated blood.
And from that day, we are together. We are working for Thalassemia.
Thalassemia Major Child:
I think he’s the father of all Thalassemia Major children in Mumbai. And because of him I’m surviving.
Think Staff Member:
Vinay, there is a child in St. George hospital, she’s called Divya. She is receiving blood transfusions be she has not, started any iron chelation.
Vinay:
If the child is 15, 16 years of age, and has not received iron chelation until now, then, I'm, I'm scared. Let’s go meet the parents, let’s find out what the problem is.
Think staff Member:
Hi! Hi.
Vinay:
Sit, sit, sit, sit.
[to Mother] How often does she get transfusions?
Divya’s Mother:
Every 11 days.
Vinay:
She is getting transfusions, but what about the iron medication?
Divya’s Father
No. Nothing.
Divya’s Mother:
Next month is her 15th birthday. Because of God, Divya has lived to be 14, without taking any medication.
Vinay:
Sure, God’s mercy is there, and we want her to grow up and do good things. But we can’t leave everything to God. We must do things too. Blood is one part of it. But the iron tablets are very important.
It’s important you start.
And if you need anything, our foundation is here.
If you look at it, this is our family. We are a Thalassemia family. If you need anything, do not hesitate to ask.
Don’t worry about the treatment. We’ll give you support.
Divya’s Mother:
We want Divya to get married into a good family. And this illness should end soon. This is what I want for her.
Imran:
Around 8:30 I got a call from a friend saying that one of our friends passed away because of iron overload. She was of my age. And then she passed away, Friday night.
Even my iron level is pretty high.
So that was a bit scary.
I would definitely love to live longer, especially for my mom and my sister. With my mom, her health is just declining. That's one thing I'm a little worried about.
So I have to live at least for them.
Text:
Think Foundation Offices
Vinay:
So you write, the Honourable Shri Suresh Shetty. Minister for Health and Family Affairs.
We have written to the government, of course. Saying that the iron celation should be given free to all Thalassemic children.
There is Thalassemia in London. There is Thalassemia in the U.S. also. What happens to those Thalassemia children? They get the best of treatment.
If the Health Minister agrees to my proposal, all children suffering from Thalassemia Major, will get the iron chelation free.
Text:
Suresh Shetty
Health Minister
Suresh:
It's not that I wanted to become Health Minister. My party and my leaders, uh, gave me the portfolio so I have to handle it successfully.
Text:
Grand opening of grocery store
Suresh:
Thalassemia is a very age-old problem, it's nothing new. It has been remaining in this planet Earth for quite some time.
There are a lot of patients, especially children, who are below the poverty line.
Divya:
My friends, they are younger than me.
[to children] Come! Let’s go!
[to Girl] How old are you?
Girl:
Six.
Divya:
Six.
Girl:
How old are you?
Divya:
I am fifteen.
Divya’s Mother:
My Divya doesn’t look like other kids.
Text:
Sion Hospital
Doctor:
Divya? I’m going to see you now. How are you?
[interview] She was referred by, uh Mr. Vinay Shetty who's a good friend, and he's working with Think Foundation. I'm glad she reached us.
[to Divya] Do you have any problems now? Do you have any pains?
Divya:
My whole head hurts.
Doctor:
Your whole head?
Now take deep breaths.
[to Mother] She started chelation too late. She should have been chelated from the age of three and a half.
All this is iron pigmentation.
[interview] If you give only blood transfusions to a Thalassemic and no chelation, they won't survive beyond 12, 13, 14 years of age. Like middle of the second decade they would probably die because of the iron overload in the heart.
[to Mother] Do you know the problems she has because she did not get medicine?
Divya’s Mother:
No, I don’t know.
Doctor:
Nobody explained?
Divya’s Mother:
No, nobody.
Doctor:
The iron medication is so important. In the brain there is something called the pituatory gland, if iron gathers there they won’t grow in height.
When girls reach 13, 14, they get their periods. In other ways they grow, that will not happen to her.
Did you ever talk to the doctor about this?
Divya’s Mother:
No.
Recently we started taking this medicine.
Doctor:
Which one?
Divya’s Mother:
I couldn’t afford this.
Doctor:
So Vinay is giving this to you?
Divya’s Mother:
Yes.
Doctor:
Then don’t worry. Ok?
If you give this medicine, the excess iron in her body will come down.
Vinay:
If the iron overload is taken care of then straight away you can add another 15,
10 to 15 years to the life of a Thalassemia Major child.
Imran:
Mom, I kept a needle here.
Imran’s Mother:
[muffled]
Imran:
Why did you move it?
Imran’s Mother:
No, it was out, so I kept it here.
What is it?
Imran:
Needle.
Imran’s Mother:
Here. This is it, right?
Imran:
Yeah.
I take this 5 times in a week. It’s a drug to remove iron from the body.
Boy:
What are you doing?
Imran:
Babu, I have to take my injection.
Boy:
What’s happened?
Imran:
I’m taking my injection, little one.
[indistinct conversation]
Imran
He's my friend, we were in school together. I’m elder to him by 2 years.
Imran’s Friend:
One year.
Imran:
Two.
Imran’s Friend:
But I am still taller than him. [laughter]
Imran:
How much time did it take for you to do MBA?
Imran’s Friend:
Two years.
Imran:
Two years. And how did you pay for the… uh, what was the course fee?
Imran’s friend:
5 Lakhs
Imran:
5 Lakhs for the course fee? You paid 5 Lakhs?
Imran’s Friend:
Yeah.
Imran:
Rich man, you are. [laughs]
Do you have a girl yet, or are you still single?
Imran’s friend:
When would I have the time? I have to work by 8.
When are you planning to marry?
Imran:
I don't know, I'm actually, I don’t- I'm not sure if I'm planning or not.
Imran’s Friend
Why?
Imran:
You know it's not, it's not gonna be easy.
Imran’s Friend:
Why don’t you go in for a Thalassemic girl? Because she might understand you better.
Imran
Actually, you know what, I mean- there's one girl in my hospital, I mean I like her, but then I'm not sure if she's gonna say yes or no. And we're just friends. I mean, if I feel that the time is correct now, then I'll probably go and propose her. If it works, then great.
[indistinct conversation]
Vinay:
The Health Minister, he was organizing this green walkathon.
We still haven’t met. So I’m hoping to meet him now, and find out what’s the status of the proposal.
Text:
Walkathon For The Environment
Vinay:
He is the Health Minister. His approval is required for everything.
Health Minister:
Go, go, go!
Organiser:
Keep walking, keep walking. Keep walking, keep walking.
[mingled voices]
Vinay:
When the Minister came, I had an opportunity to meet him.
And he has already said yes, we will provide the medication to all the 5,000 children in Maharastra.
But now to translate that into action on the ground. It's the worry that I have, how long will it take?
Health Minister:
As far as Thalassemia is concerned, there has been a slow revolution taking place in this country.
We are in the process of formulating a policy where the State can provide this medicine to Thalassemia patients free of cost, uh, by the government. We are still in the process of finalizing this.
Divya’s Mother:
Divya! Divya! Come, sit down.
Divya’s Father:
Where’s my hot water?
Divya:
I told you already.
Divya’s Mother:
Did you get your paycheck?
Divya’s Father:
No.
Divya’s Mother:
How long can we last? We don’t even have milk.
Divya’s Father:
Why don’t you get it from that store?
Divya’s Mother:
We haven’t paid him, I’m embarrassed to ask for more.
Divya’s Father:
So? We’re going to pay him.
Divya’s Mother:
What about her school fees?
Divya:
The teacher is bugging me about fees.
Divya’s Mother:
They keep asking.
Divya’s Father:
One more day, I get paid tomorrow. I’ll give you the fees then.
Divya’s Mother:
[to Divya] So don’t go tomorrow.
We needed to give 5 rupees to the potato guy. It’s difficult to go out because of 5 rupees.
Divya’s Father:
We don’t want to keep his 5 rupees. We’re not like our neighbours.
Divya:
My brother’s name is Jayesh. He’s older.
Jayesh:
I left school when I was 16. Divya really likes school.
Divya:
When I get older I would like to become a teacher.
Divya’s Mother:
Jayesh is going to get married. He’s going to have a love marriage.
We’ve not fixed a date, but it’s next month.
Jayesh:
I don’t want my kids to have Thalassemia Major.
Vinay
Divya is a Thalassemia Major only because the two parents did not know that they were Thalassemia Minor. Anybody in this country can be Thalassemia Minor. Anybody in the world can be a Thalassemia Minor.
If you look at the Indian population, an estimated 40 million Indians are Thalassemia Minor.
Do you know if your son is Thalassemia Minor or not?
Divya’s Father:
No.
Vinay:
Because you and your wife are Thalassemia Minor, that is why Divya is Thalassemia Major.
Your son, he is either normal, or Minor. Do you know whether he’s normal or minor?
Divya’s Father:
No. He’s never been tested.
Vinay:
So he needs to be tested.
Marriage will happen and his children shouldn’t have any problems.
Jayesh:
My mom said they’re going to test me.
Doctor:
What’s your name?
Jayesh:
Jayesh.
Doctor:
Your full name?
Jayesh:
Jayesh Chauhan. Jayesh.
Doctor:
Close your fist.
Jayesh:
This is an injection? I’m scared of injections.
Doctor:
You won’t even feel it.
Divya’s mother:
There’s a nice vein!
Don’t look! Just close your eyes.
Doctor:
It’s over. It’s done.
Divya’s Mother:
You have to give me a report for this.
[indistinct talking]
Divya’s Mother:
How are the boys at your school?
Divya:
They’re all useless.
Divya’s Mother:
How are your friends?
Divya:
They’re not good.
Divya’s Mother:
Not good? Are they girls?
Divya:
Yes.
Divya’s Mother:
They’re not calling you? Are they mean to you?
Divya:
Yes
Divya’s Mother:
Educating you, is a waste of time. What will you learn about your household duties? If you learn house work, then I can look for a job outside. Then at night, I will only have to cook. Otherwise, it’s on my head to clean and cook.
Divya:
If I didn’t have Thalassemia, then like other kids, I could study hard, and I could become someone.
Imran:
Jeez, the lights are off!? Oh my God, shit. Uh… Now when will the light come back on? Had to cut out on a Sunday.
Imran’s Mother:
There’s no light in that building too. That one, that building.
Imran:
But the front one has.
Imran’s Mother:
The one on the other side doesn’t.
Allah! [sighs]
Imran:
Yeah, it happens quite often. Sometimes, you know, there's no electricity in the entire area, sometimes only in this building, sometimes only on this floor. It's quite unpredictable and
it generally happens on Sunday, when you have a weekly off, to screw your day! [coughs]
When will the light come on?
Vinay’s Sister:
There is no night or day for him.
Text:
Vinay’s Sister
Vinay’s Sister:
Anytime is work time for him. He feels like he has no time for anything. A total workaholic. [laughs] That’s the way it is. He believes that, I think, uh, hands that help are holier than lips that pray.
When you look at him you feel this a real example of that.
[cell phone rings]
Vinay
Hello.
Yeah, yeah, Vinay Shetty, what is it?
Text:
Vinay receives a call from his sole sponsor in the US.
He is told that because of the recession they are cutting all support to Think Foundation.
Vinay
We are in big trouble. The plan is to move to this, uh, this small office. We’re trying to keep it to the bare minimum, because we know that we don’t have the money right now.
I cannot afford to cut the salaries of the others. The only salary that can take a beating is mine. So I have to take a cut on my salary.
There’s hardly anybody there in the office.
[conversation in Marathi]
Text:
Think Staff
Think Staff Member:
Alright, shall we go?
I wanted to talk about something.
Vinay:
Hm?
Think Staff Member:
I wanted to talk to you about something.
Vinay:
You can talk.
Think Staff Member:
We can talk tomorrow.
Vinay:
What’s the matter?
Think Staff Member:
It’s about a job.
Vinay:
Uh-huh.
Think Staff member:
I’ve got a job offer, and I’m wondering if I should take it.
Vinay:
If it’s a good job and steady work, I won’t ask you not to take it.
Think Staff member:
I have problems now. I have to put my child through school.
Raise my salary by 2,000RS and I could have stayed.
Vinay:
When do you start?
Think Staff Member:
On the 1st.
Vinay:
But everyone is on holidays now.
It is tough times really. I cannot think of Think Foundation closing.
If that happens then, I’ll blame myself. I’ll say I have not put in the right amount of effort.
[indistinct talk]
Text:
Vinay’s Mom
Vinay:
This office feels very claustrophobic, there’s no space.
Vinay’s Mother:
What if they increase the rent later?
Vinay:
They won’t increase the rent, the whole building is for NGOs.
Vinay’s Mother:
Are you paying your staff on time?
Vinay:
The staff is getting paid.
I’m doing all the work I can for the minister to make his decision easier.
If the government agrees, then in one stroke, they can take care of 5,000 kids in our state. But they are taking their time, so we have to find individual sponsors.
Vinay’s Mother:
Oh my God.
Vinay:
It will be difficult for a while.
Vinay’s Father:
Are you generating any income?
Vinay:
I am with Think Foundation. Papa now you forget that. We will talk about that later. Right now there is something – you just stay out of it. Just don’t say anything.
[muffled voices]
Vinay’s Mother:
As long as I’m still here, everything will be fine. I will take care of him. As long as he is happy, that’s all I want.
Vinay:
Hello? Jayesh is there right? -When will he get up?
Jayesh:
Divya is still sleeping? Let her sleep.
Vinay:
The report is here. Just as I thought, he is Thalassemia Minor. There is no need to worry, but you must keep one thing in mind, when you get married, whichever girl you marry should be tested. Can you tell me what you understood?
Jayesh:
I don’t understand.
Vinay:
Listen. Do you have to do anything?
Divya’s Mother:
Do we need to start medicine?
Vinay:
No, nothing.
Jayesh. Mom forgets or Dad forgets, everyone forgets, you remember. When I get married, I have to get my partner tested. There’s only one thing you have to do.
Divya’s Mother:
I don’t believe in Major or Minor carriers. You cannot erase what is written in your fate. Whatever is meant to happen, will happen.
Some people have good luck, and this was my luck.
[cell phone beeps]
Vinay:
What's happening today is I just got a call from the Minister’s office, to discuss the proposal that I’ve given to them. About the iron chelation drug, being given free to all Thalassemic children.
And if that is being provided to all the children, it’s going to be huge.
Sign: Cultural Event Sponsored by Suresh Shetty
Suresh:
How’s the website?
Man at Meeting:
I have only one – I want to block the, uh, Suresh Shetty dot com.
Suresh:
How’s everything else?
Vinay:
We have this program for the Thalassemic children.
We're having a workshop at Bhutan hospital for Thalassemia children as for the treatment aspect.
Suresh:
Anything else?
Vinay:
The iron chelation is the, big difference maker actually as far as Thalassemia is concerned. Because that’s – 95% of the problem will get solved with that one thing.
The only thing. I'll keep you briefed about everything.
[mingled voices]
Suresh:
Give him some more election posters and stickers.
Staff member:
The little stickers, yeah?
Man at meeting:
What is the event about?
[mingled voices]
[thunder rumbles]
Text:
A few weeks later Vinay is told that his proposal is not moving forward.
[rain patters]
[traffic noise]
Text:
Think Foundation
(New Location)
Think Staff Member:
[on phone] Is this Divya’s Mom? We have tried calling you so many times! We can never reach you.
[to Vinay] Yeah Sir, you know what’s happening with Divya, Divya has actually skipped her medicine quite a bit. So I don’t know who to send and…
Vinay:
What I’ll do is I’ll leave 10,000RS with you. So you can send him tomorrow, let him get the medicines.
[indistinct conversation]
Think Staff Member:
Divya’s brother, right? Come in, come.
Have you been giving her the medicine?
Jayesh:
It ran out.
Think Staff Member:
How long ago did it get over?
Jayesh:
I don’t know when. [to friend] Sign for it.
Sign it.
Think Staff Member:
Divya.
Jayesh’s Friend:
How do you spell Divya?
Jayesh:
Divya is spelt D-A-Y-E…
Jayesh’s Friend:
How do you spell Divya?
Think Staff Member:
D-I-V-Y-A
Jayesh:
I don’t know much.
Jayesh’s Friend:
D-
Think Staff Member:
I-V-Y-A
Jayesh’s Friend:
That’s it, let’s go.
Think Staff Member:
Please give it to her every day, and call us when it runs out. Then you can pick up more from here. Ok, this is only enough for one month.
Now it’s been quite a while since she’s taken it. Ok?
Jayesh:
Ok I’ll let the know.
Divya’s Mother:
When I go to buy things I always say that she has this problem. Give us a discount. So they give.
So she screams at me why do you say that all the time?
Divya:
No one should know. I don’t like it.
Divya’s Mother:
When she dies they’ll know she had this illness.
Even if she’s dying, she’s happy.
Text:
St. George’s Hospital
Vinay:
These are all multiple transfused kids. They keep receiving transfusions throughout their lives. Therefore, the worry of safe blood is a very serious concern to all Thalassemic children.
Imran:
Should I check it?
Doctor:
Go ahead.
Vinay:
What’s the point in giving blood to anybody if it carries a virus?
Imran:
I mean, it was just a routine blood test I had gone for. Then I went to a doctor. I showed him the reports then he said, “you’re infected with Hepatitis C virus.”
I really get scared when I just think about it.
You know, this adds to our problem. If it was HIV positive, oh my God I don't know what I would've done- I would've probably committed a suicide for sure, because I don't wanna die slowly.
We’re going to meet a specialist today. Vinay Uncle had actually made arrangements for this meeting, because the doctor’s generally very busy.
Text:
Dr. Abba Nagral
Dr. Nagral:
Yeah, now see basically this is a virus, which is, in our country, most commonly transmitted by blood. Um, this is clear only in about 15 to 20 percent of patients. So 80% would continue to have it in their body, it would stay back in the liver, start multiplying in the liver and slowly damage the liver.
Imran:
I've got friends who've got Hepatitis C and - just talking to them and I found out that the side effects of this injection are very severe.
Dr. Nagral:
It's an expensive drug and it's a drug which has side effects. You can have body ache, fever, headache. You could even feel depressed.
But at this point in time I want to tell you that even when we give you this drug, uh, it's not 100 percent response to the drug. But in patients with Thalassemia it's a little lower because you have excess iron in the liver because of the blood transfusions, and that makes the response not as good.
Imran:
How about, what about the cost? I mean, and how much it's going to cost me?
Dr. Nagral:
It will come to around 4.5 – 5 lakhs for 6 months.
Imran:
Just curious, I mean, somehow if I'm not able to get this treatment done, is it going to be fatal because you're talking about cirrhosis in the liver, so?
Dr. Nagral:
Yeah, it is. I mean going to, the liver is going to get scarred over a period of time.
Imran:
Gets scarred.
Dr. Nagral:
It's scarred and shrunken and once it gets scarred, the liver functions start deteriorating and you start getting complications of liver disease.
Imran:
That means it's going to kill you but slowly. This liver thing is a little scary, no?
Dr. Nagral:
I think one has to be sure about the finances. You don't want to start it and then realize that you cannot afford it and you know, discontinue and have a gap. We would not recommend that.
Vinay:
Imran, I need to chat with her a little more, okay?
Imran:
Yeah, sure, thank you, doctor.
Dr. Nagral:
Okay, bye.
Vinay:
Yeah, so what is the urgency actually? I mean...
Dr. Nagral:
No, I would say it's not desperate but yeah, the earlier we start it the better.
Vinay:
It’s going to be difficult for me to raise the money.
But, we will raise the money somehow.
If I put pressure on myself, then I’m sure I’ll get the money from somewhere.
That is sadly speaking, the way I- you know- operate, actually. So I’ve decided that we’ll start.
Imran:
Not only it affects the liver but then the treatment is very expensive.
Vinay:
Let me do all the worrying. You know, don’t worry about the money that is required for getting medicines.
Text:
Festival For Goddess Durga
Divya’s Mother:
We invite the Goddess into our home for 10 days, and worship her twice a day.
Woman:
You’re slim and the saree’s big. Hold this!
Divya:
Am I thin?
Woman:
No! You’re fat!
Divya:
I like sarees very much.
Woman:
Pull up those pleats.
Fold it rather than raising it. Do that.
Divya:
Why fold it? Raise it!
Woman:
You don’t understand things.
Divya:
Put on the eyeliner too.
Woman:
Yes.
Open your eyes. Go put the bindi on.
Divya’s Mother:
Take a photo on your cell phone.
Stand like this and with your hands like this. Smile, don’t make that face.
You’ve got your face very high up.
Man:
What’s happening with the medicines? What has the government said?
Vinay:
We have tried a lot to get the government involved. It will definitely get done. But it has been delayed.
Man:
Everybody knows about AIDS. But nobody knows about Thalassemia.
Vinay:
These are such educated people, but they don’t feel this is important.
[indistinct chatter]
Vinay:
I told you about the proposal we had given the government.
And you know, the initial reaction was so positive. They said "Okay, yes, now there's a solution to the problem of Thalassemia and the iron overload part."
Text:
Vinay’s Sister
Vinay:
Though it's not gonna happen as fast as I expected it to happen. In the meantime, there are all these children who are Thalassemia Major and have got an iron overload problem.
And you know, the stress is there for you to see, you know.
Vinay’s Sister:
In your case, it is charity begins at home. That's how you start and then it goes on.
Vinay:
If you ask me, charity always begins at home really. If you're not willing to put your hand in your own pocket, you have no right to ask anybody else.
Vinay’s Sister:
Ask somebody else. So are you worried now?
Vinay:
Right now the situation is pretty desperate.
Vinay’s Sister:
I feel that Vinay's name is definitely there on top of God's list.
And um... One sec.
Anybody talks about Vinay, it always ends up like this [sniffs] 'cause he does so much for everyone. And look what has happened to his life. He's all alone.
Text:
Vinay finds a sponsor to pay for half of Imran’s treatment.
The other half he pays out of his life savings.
Imran:
My health, it’s not that great. [coughs] I’ve had this cough for a month now. I just cannot speak. Because of this treatment, I’ve lost like 4kgs. Every week I have to take this injection.
[to Mother] What do you think of all of this?
Imran’s Mother:
My boy goes through so much pain. He has to take so many injections. So much medicine.
It hurts me.
When will he get better?
[to Vinay] I don’t want wealth, anything. I only want my son to get better. That is whay I pray to god for Imran.
What else does a mother need?
Vinay:
Now he’s taking his medicines. Things will work out.
Imran’s Mother:
But I am alone in this.
Vinay:
Ah! Do not worry, we are here with you.
Divya’s Mother:
Don’t throw it in there! Wash it!
Divya’s Father:
Did you make tea?
Divya:
Yeah I have to strain it!
Divya’s Mother:
Divya, throw away the garbage.
[indistinct chatter]
Divya:
I get sad when I see the other kids who get to go to school.
I want to live a long, full life.
Vinay:
Divya are you taking your medicines? Even if mommy forgets, remind her.
Divya’s Mother:
She has not been going to school for six months.
Vinay:
Don’t stop her education. In India we feel this is a fatal disease. This is not a fatal disease. These Thalassemia children are like other children. They also have hopes like other children.
Whatever your son can do Divya can do the same.
You just have to transfuse blood regularly, and if you take this tablet regularly, she can be anything she wants.
Give Divya your full support, to achieve her dreams. We have to consider what will Divya’s future be?
Dr. Nagral:
So no, the virus is not responding as well as we would expect. If you're still positive at three months we may need to give you the injections a little longer.
Imran:
Little longer means?
Dr. Nagral:
Another three months or another six months also sometimes.
Imran:
Oh, that’s long.
Dr. Nagral:
Yeah, yeah, let's see.
Text:
Imran’s Sister
[indistinct chatter]
Imran:
I used to take care of my sister, her tuition fees, books and then pocket money. Now she realizes that I have to take care of my medical bills and other stuff also, so, she got a job and she’s taking care of her expenses.
[to Sister] What are your university fees?
Imran’s Sister:
4500RS.
Imran:
For the whole year?
Imran’s Sister:
For the whole year.
Imran:
What are the fees for the tutorials? I’ll have to call someone for private home sessions.
Imran’s Sister:
He said 20,000 for a month.
Imran:
Has he gone crazy!? 20,000 per month!
People don’t even earn 20,000!
Imran’s Sister:
No doubt they guarantee you’ll pass if they take 20,000 a month. You have to study throughout the year.
Imran:
If you bribe you will pass. [laughs]
Today, I’m going to meet my friend.
To go out with, I would say a girl should have a good sense of humour. Should have brains, not just beauty. That’s it.
She’s Thalassemic Major. We’re in the same hospital. She’s fun.
Vinay:
I have decided that I’m not going to wait for the Health Minister. I’ve started approaching individuals and organizations. Some of them have sent us checks already…
And if we get a thousand such people we’ve taken care of a thousand children.
So thank you very much. I'll be back, yeah.
Man:
Deliver it to me.
Vinay:
Yeah, sure.
All Thalassemic children are an important part of my life.
Knowing Imran, I feel that he’ll come out of this.
[to Imran] Hi, Imran.
Imran:
Hi, Vinay Uncle, hi.
Vinay:
How are you?
Imran:
I'm good, how are you?
Vinay:
Good, good. I'm very good.
Imran:
Sit, sit.
Vinay:
What happened?
Imran:
She had a stress fracture. So we got this plastered.
Vinay:
Oh my God. It’s a forced rest. [laughter]
So, how are you, yeah?
Imran:
My last trip out, it was not great. I mean, now only five injections are left so that means a month is left. But if the report is not good, then, uh, we might have to do it for a little longer.
Vinay:
Even if it means another six months, we’re gonna - we'll do that. What I mean is, why did we do all this?
Imran:
Yeah.
Vinay:
To see that your Hepatitis C problem is solved.
Imran:
Sure.
Vinay:
So we need to do whatever is required to be done.
Imran:
Now, when I'm gone for transfusion last Monday, there were two new patients, brother and sister. Now, I mean, first when I saw them they were, I mean, the kids were dressed very shabby. The mom, she said, "My husband and my relatives, they're like, 'why are you even taking them for blood transfusion?' Just leave them as it is.'"
Their mom is the only earning member, so she said, “my monthly income it’s only 2,000RS, I can afford treatment for only one of them so I'm doing it for my son. For my daughter, we'll see."
So...
Vinay:
We can try and give her the iron chelation.
Imran:
Shall I get the details?
Vinay:
Just pass them on to me.
Imran:
Yeah, and I'll definitely let you know.
Vinay:
Good, good. So, it's like almost nine o'clock.
Imran:
Yeah, I leave in ten minutes and then- Do you know where Bombay Hospital is?
Vinay:
I can drop you there at Bombay hospital.
Imran:
You can?
Vinay:
[to Mother] So I’m going the same way so I’ll drop him there. [chuckles]
Imran’s Mother:
You’ve become like family. Thank You for your help.
Vinay:
You don’t have to worry. Shall we leave.
Imran:
I’ll be back in a bit.
Vinay:
Think Foundation is here to stay, as far as I’m concerned. Tomorrow somebody will say that what you have left in the bank is one rupee, even in that state I will say no, Think Foundation is here to stay. Because we feel that they’re our kids.
[indistinct chatter]
Imran:
Actually, I'm not worried because, I mean there's no point in worrying. I mean, it will, it will not help you so why to worry. Just work on it and things will be all right.
Interviewer:
You sound like Vinay Uncle.
Imran:
[laughs] That's actually a compliment.
Vinay:
I don’t know what’s going to happen tomorrow, day after tomorrow, that’s the fact of the matter, but I’m not going to give up. I need to take care of my family.
Imran:
Thank you, Vinay Uncle.
Vinay:
One step at a time. One day at a time.
Text:
Divya’s health is improving but her parents have taken her out of school.
Imran still struggles with his Hep C and continues to take treatment.
He helped create the Youth Thalassemic Alliance, a support group for patients in Mumbai.
Vinay continues to run Think Foundation with new sponsors and a small, but dedicated team.
With over 200 million carriers, Thalassemia is the most common genetic disease in the world.
To get involved join the movement at BloodRelative.Org