Hassan - Interview 30

Age at interview: 18

Age at diagnosis: 3

Brief Outline: Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan but the family has relocated to the UK because he needs specialised medical care. With the help of his home tutor Hassan is writing a story about his experience of living with DMD. Hassan's message to other people living with a chronic condition is never to give up.

Background: Hassan lives with his parents and a younger brother. He has five hours of home tutoring. He would like to attend school but the authorities have failed to find him a place. Ethnic background/nationality' Asian Pakistani.

More about me...

Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan and says that his mother and grandmother first noticed that something was wrong because as a child he used to fall down a lot. His mother took him to the doctors but they told her that there was nothing wrong with him. When he was around 3 years old his parents brought him to a hospital in London where he was diagnosed with DMD. Hassan's condition is deteriorating and he began to need many medical facilities that were not available in his home country. His father therefore decided to put his career on hold and bring his sons to England. Hassan's brother also has the same condition - DMD. 

Hassan says that he has grown up surrounded by the love and care of his parents, grandparents and extended family. Back in Pakistan he attended a mainstream school and other children were always supportive and attentive to his needs. In the U.K. Hassan has been unable to continue with his education as the local authority has failed to find a suitable school place for him. He would like very much to go to school and continue with his education. However he does have five hours of home tutoring each week. With the help of his tutor Hassan is writing a story about his experience of living with Duchenne Muscular Dystrophy. He wants to show that even when you can't walk you can still do many things like writing a book.

On 8th October 2005 Hassan was taken to hospital as an emergency, unable to breathe because of a lung infection. Doctors told his parents that there was nothing more they could do for him and that it was time for him to die. His father became angry with the doctors and insisted his son be transferred to another hospital. For a month Hassan was in a critical condition but he pulled through. He says that only God has the right to determine when you die, not doctors. 

Hassan has a fighting and positive attitude. He does not want to give up and is determined to go on. But he also says that it is difficult to live with his condition, and that sometimes he is sad and angry, and that he gets through because of his mother. 

Hassan's message to other young people who are living with a chronic condition is never to give up. He says that he has lots of problems but that he is still happy.

His mother suspected that something was wrong because he used to fall down a lot. The doctor (in...

Hello my name is Hassan [surname]. I've Duchenne Muscular dystrophy and this is my story.

I was born on February the 15th and everybody was very happy in my family because I was the second boy to be born. And at that time nobody knew what, what, what disease that I had because everybody thought I was ok. And my mum was at the hospital so my grandmother took me home. She used to make me drink milk from the bottle and so on. And everybody thought I was ok. But when, slowly I gradually grew up. My grandmother and my mother saw something in me that wasn't quite right. When I ever used to walk and run I used always to fall, always used to fall. 

And my mother told this to every doctor in Pakistan, every doctor. They said, 'Nothing wrong. Something is wrong with you.' They told my mum there's something wrong with her. And he said, 'You should have another baby'. Because you know how doctor's say, say that something's wrong with you and not with your child. So my mum had [name] and when he was born after that we found out. 

We came to England and we went to the hospital, [name] Hospital in London and  they took my biopsy. It was on my left leg. And then we got the bad news that I had Duchenne Muscular dystrophy and this dystrophy came up in, in our family. We were the first kids to have muscular dystrophy, both of us. And my mother was in shock and my father was, said that 'He could not believe it'. And the whole family knew.

And I then grew up as every boy does and I had a very good childhood. Everybody used to love me. Said I was the greatest boy in the world and I got all the presents and. But I was a very different boy. I used to take care of everybody. I used to be like I was very kind. I used to talk to kids and everybody, to my mom. I'd write stories.

He was taken into hospital as an emergency, unable to breathe. His parents were told that it was...

Hassan' In the evening and then for after eating food I felt this weird. My heart was racing at the speed of 170 beats per minute and I felt weird. I thought I was about to fall or 'cause my fingers were shaking like they were shaking because I thought that, 'What's wrong with my heart? Why am, why is my fingers?'

Mother' Racing, palpitating.

Hassan' But I had palpitations and I my mum said you will be ok or whatever, you will be ok. Half an hour later I said, 'We have to go to the hospital now'. We went directly to the emergency room. We waited for a while. Then doctors came. They did some tests. Oh my, checked my wee. I had a bit of an infection in my, in my wee and I thought. They said, 'We'll keep you overnight'. So I said, 'Ok'. But I told them I have a scratch in my neck.

Mother' Throat.

Hassan' In my throat. 'Can you give me a medicine?' They said, they didn't give me a good medicine. And we slept, I slept there all night. In the morning I woke up and everything was ok and I had breakfast. I was still in the hospital and then when it was the afternoon I started feeling very weird and in the evening I couldn't eat food. Something was wrong. And my mother and brother and my carer went home. Dad said, 'I will stay with him.'

Mother' Within 24 hours the infection had gone down.

Hassan' Yes.

To your lungs?

Hassan' And I, my bronchials got stuck I couldn't breathe. My going down. My father turned me over because my father knew how to do therapy. So he did for two hours. I couldn't breathe because it was getting stuck and stuck again. It sounded as though I was crying out. Scared I said, 'I don't want to go now.' 'Son nothing will happen to you', my dad said. 'I'm here.' And then two hours later they did an X-ray. In the X-ray I had pneumonia, only half of my lung was open, one. And mother came. She got scared, 'What's, what happened? What's wrong with Hassan?' You said, 'Try to sleep'. And I couldn't sleep I was in so much pain. My mother and father were whispering that is 'What do we do now?' And I, in the night at 2 o'clock I couldn't really breathe now because I was gasping for air. From two to the afternoon of two, ten hours I was gasping for air. I said, 'When are you bringing me my mask?' 'When are you bringing it I can't breathe'. 'Can't breathe,' the doctor said. 'We can't bring it you're not in that Intensive Care. It's time for you to die.' He told my father and father, 'He has to go.' 
 

His father became angry with the doctors when told that there was nothing more they could do. He...

And my father was crying. He was so. He said that he would never let anything to happen to me. 'Don't let anything happen to him doctor. If you do anything to my son, if you don't give him any ventilation, any medicine I will kill every one of you. Well this is wrong. This, you don't decide this. You don't decide that when he has to die when a person has not. God decides that, not you. Well what, what if you were in this position doctor? What if your son was in this position? What could you do? Would you let him die? No you wouldn't. In God there's a greater power than you, is God. You can't decide when he has to die. He has to. Even if you're not honest with him. But I believe it's not his, his time.' My father said. Because you're just killing him. 

They were just killing me. You won't. You just said. Dad said, 'It's over. Why would you say that when somebody knows that it's not their time, it's not.' Because I knew because I knew I had more life. I had more. I could. They just condemned me to death. You can't condemn me to death. Only God can, he can, not you. And it's wrong.

It is hard living with muscular dystrophy but he refuses to give up. He is writing a book about...

Hassan' And they can fight. And I want to show the world that if you fight you can achieve anything even if you can't walk, you can achieve anything that you put your heart to. You can go through a disease. And sometimes I get angry, sometimes I get sad but then my heart says, 'Come on again, you will fight again. There's another day, there's another day.' And that's how I go through. I tell my mom this. She cries every day. She can't handle it. Sometimes she gets frustrated like me and my father but they love me and they will do anything for me. And I just want to help anyone who's like me and different problems.

Mother' According to doctors he should have died two years ago but he's still going on [laugh] and they're amazed [laugh].

Hassan' People can live with diseases as long as they can.

Mother' As long as they have the willpower.

Hassan' As long as they have the will.

What have you learnt?

Hassan' Because I want every person in the world should realise this who has any disease that don't say 'You want to die now'. Say, 'You have to, you have such a long life ahead of you even if you can't walk or talk or can't hear or can't see you can do, you can go for a long time and do so much for a lot of children.' A lot of people who think there's no hope but there is.

And I never wanted to grow up 'cause my disease grows as I grow up. I thought of myself as Peter Pan. He never grew up and be young forever. And I still have a good imagination. I read books and I do everything. I study.

It's really difficult for me to go through this. It's very hard. But I get through because of my mom and I tell her that everything's going to be ok and she cries. I do cry every day 'cause I'm still very sad that I have this. And every day I have to go through it every day and get up on and go in the bathroom, have a bath. It's really difficult. And it is tiresome. It is very tiresome to get up in the morning, take a bath, go in the room, put on clothes. Then come, go eat food and do all of the stuff. It is difficult to go to the appointments and go around and go to the doctor. It's very hard.

Mother' It totally.

Hassan' It is hard but then I have to do it because I want to show everybody that you can do a lot of stuff. You have to go through your life as long as you can because as ever you have your oxygen in your body you're alive. You have any, you've heart in your body and anything because life is very precious. You need to live it to full not to give up just that you're sick and that's it. I want to die and, and give up. I'd hate it. One part of my body says this to me. The other part says, 'No, don't give up, don't listen to it. Don't listen to your disease then stop it. Come on you have to stop it. Go to the doctors as many times as you can.' 

Mother' Its only willpower...

Hassan' And whenever I, I talk to my disease whenever it's coming back I say, 'If you come back I'll knock you down again, and again, and again as many times as you come back.'

Mother' And who have you taken your inspiration from Hassan?

He could not find the disabled access at a London museum he wanted to visit. But he is busy...

Hassan' And I don't have any access. Once we went to the Natural History Museum in London and there was no entrance. I couldn't find an entrance for me and so we couldn't go there. So we went to Madame Tussards. They had a way so, so I went there. Couldn't go to the Natural History Museum, no access. I still want to see the Museum of Natural History if there is a way to go in.

You should write to them then [laugh]. Ask them what about access for people in wheelchairs.

Mother' We wrote a letter to MacDonalds.

Hassan' To tell them that Muslims need halal food and we are Muslims so they should be halal food. There should be halal MacDonalds for the Muslim community. There is a huge Muslim community in England that is so. And they wrote back and said we don't have enough space in the kitchen [laugh].

My teacher wrote to the author, you know, who wrote Harry Potter. He told her, 'Please Hassan, it'll make Hassan's day to give, wish him Happy Birthday and by you signed a letter to Hassan. So she said, 'Maybe it will happen maybe she will, maybe she won't even send a card'. But she did.

Yeah. 

Hassan' And when I opened. First I read for the attention of Hassan [surname]. And when I said, 'Why is it for me?' Then opened it then When I read it I, I'd an autograph and I thought it was a dream.

Mother' From her.

Hassan' Well I thought it was it was dream like and it wasn't a dream. I said, 'Somebody pinch me and'. But then when I read it again I said, '[Teachers name] told her'. Then I wrote a letter to Rowling back.

Mother' To thank her.

Hassan' Thank for her, for'

Mother' To thank her.

Hassan' To thank her and giving me such confidence to write my own book 'cause she's a very good writer. And I'm still waiting for an answer [laugh].

Mother' A great.

Hassan' But she gave a good inspiration for me to write and read.
 

Talks about his primary school experience in Pakistan, his brother's experience in Britain and...

In Pakistan?

Hassan' Yes in normal school. I was the only boy in a wheelchair in school but they were made ready for me. They told all the kids that, 'A boy is coming to school. Don't make fun of him. He can't walk and take care of him.' So everybody was made to watch for me. So when I went there everybody was very polite. They said, 'Hello Hassan, good morning Hassan. How are you Hassan? Are you ok? How are you feeling today?'

Mother' Whereas in this country my younger son when he went to school, would you talk about that.

Hassan' Yes I'll tell you that. But whenever I used to go to school people would take my bag.

Mother' Read to him.

Hassan' He take hold of my bag and say, 'I'll get the book out for you.' My friend told me, 'I will'.

Mother' He never had a ' he could write at that time.

Hassan' Yes and, and my friends love me because they'll talk to me. Said, 'One day you'll play football with us, one day you'll walk.' I said, 'I hope so.' And I used to laugh, 'And maybe I'll win and you'll see when I walk'. So. And then they said when I was going to England said of, 'Take care and come back walking. You'll come back again'. And when we came here I didn't go to school. They're still finding a place for me to go to school. So that's why I'm tutored at home. 

And my brother when he goes to school everybody makes fun of him. It wasn't because, we were Muslim and then they talk about that you're a Pakistani, you're a Muslim and you've, you're a bomber and these weird things they just say. So [brother] was scared to go to school. Every night he couldn't sleep.

Mother' He was bullied so much.

Hassan' Said I honestly I don't want to go tomorrow, I don't want to go tomorrow to school. But my mom made him because he had to study. So one kid was making him so, feeling so bad that my mom told the teachers that, 'If you don't do anything I will do something.' The teachers got a bit scared. They said, 'Ok we'll tell, warn the boy'. So he was warned then he didn't bully [brother] ever.

We have gone to normal schools. I don't like it when I see other children in different.

Mother' The only difference that we have seen there in Pakistan and here we thought that people would be more accommodating and caring. Whereas in Pakistan, you know the attitude of children was given more sympathetic and kind towards them whereas here they are not which, which was very strange for us to find here. But I think I don't know what was, what is the reason basically. They make fun of the way he speaks. Of course they grew up in another country but they were still speaking another language so I kind of pacified my child by saying, 'That at least you speak more, more than. You know you speak two languages whereas they only speak English.' And so I'm always trying to give him a pep talk and back him up and tell him that, 'You know, you, you're better off. You're a better person. So you should be having a big heart to forgive them'. But he's had very, very bad.

Hassan' He has been very different.

M

He tells other young people with muscular dystrophy not to be scared. God gave him a brain and a...

Well you have to go through it you have to fight it. You have to never give up. You have to be, you have to have courage, never be scared and live your life happily. But if there are problems you have to go in your heart and say, 'You can do this'. You have to fight like I have. Any person who has any disease, any different problem just try to cope and try to fight. And you could do a lot of things if you try to help anybody or you make anybody happy because you are the one who can do the stuff. You're the one who can help other people like me, like I'm doing now to help you. 

I have a lot of problems and I am still happy and I go through it. Sometimes I'm sad, sometimes I'm angry but then some days I think well it happens for everybody and you have to go through it. God has chosen me. Maybe he has chosen you too, you, all of you. Like me I have the disease but I have one thing that I give everybody, happiness. And that you can give it to a lot of people. Whatever disease you have but God has given you one thing, a heart and a brain and a good spirit. So whoever you are just think that everything will be ok. Somebody's looking after you up there.