Welcome to Spotlight. I'm Nick Page.

 

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　　And I'm Marina Santee. This programme uses a special English method of broadcasting. It is easier for people to understand - no matter where in the world they live.

 

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　　Imagine a large theatre in London, England. The theatre is full of people. They are all waiting for something. At the front there are performers - singers and musicians. Then a small, thin, excited young man walks to the front. The singers stand. The young man lifts his hand - and the performers begin to play and to sing. The music was written nearly three hundred years ago by a German musician - J S Bach. It describes the story of how Jesus Christ was executed - yet he was an innocent man. This story is very important to Christians. The music is very emotional. It is very difficult to play and sing. And it lasts for three hours. At the end the people clap and clap. The young man is happy. He has wanted to perform this concert for a long time. But he is also very tired. After the performance he needs to go to hospital. He will stay in the hospital for the next three weeks.

 

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　　All this happened in April 2009. The young man's name is Alex Stobbs. Alex lives in the south of England. He is a university student - and he has a gift for music. He loves to sing and to play and to direct a performance, as he did at that concert. But Alex also has a big problem.

 

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　　Soon after Alex was born doctors discovered that there was something wrong with him. He could not use his lungs very well. He could not breathe as well as most people. Also, his body could not fully process his food. Doctors discovered that Alex has a disease called cystic fibrosis, or CF. In CF, important organs in the body become blocked by a thick fluid called mucus. The mucus prevents normal processing of food and air. Most people who have CF die in their thirties. There is no cure.

 

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　　This did not worry Alex. He said:

 

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　　'I have spent most of my time trying to ignore it and simply getting on with my life.'

 

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　　Music has been Alex's love in life - his passion. When he was a baby, some friends give him some toy musical instruments. When he was three years old he could play a little music on the piano .When he was seven years old he went to a school where he began to learn more musical instruments, and where he could sing.

 

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　　When Alex was nine years old he went to Kings College School in Cambridge. This famous school has a tradition of music teaching. It is linked with one of the most famous choirs in the world. A choir is a group of people who sing together - but this choir is special. The choir of Kings College is especially famous for its radio broadcast at Christmas. It is broadcast all over the world. The choir members work very hard. The choir boys live in the school. They do not go home to their parents at the end of each day.

 

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　　Over the years, Alex has spent a lot of time in a hospital in London. The medical workers there were very kind. Sometimes, Alex would play music for the people in the hospital. He would organise special performances for them.

 

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　　When Alex was thirteen he moved to Eton, another famous school. Again, he had to live in the school. But the teachers at the school were very kind. They provided a person who could look after Alex. And they allowed him to have a special vehicle which could carry him around the large grounds of the school. This gave him more time to work on his music, which is what he wanted to do. He wanted to play, to sing, and to direct performances. And this is what he did! He still had to go to hospital many times. But he said:

 

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　　'I prefer that people do not see me as someone with CF.'

 

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　　Instead, he tried to sing as much as possible, because singing is good for the lungs.

 

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　　Every morning Alex has to do special exercises to clear his lungs. And he has to take many medicines. At night, he is connected to a machine which gives him food while he sleeps. Because of his disease Alex needs a lot of food.

 

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　　Alex has had plenty of support from his family. His mother is very strong. She drives long distances to visit Alex, to encourage him, to take his favourite food to him, and to help him with his medicines.

 

　　Alex said:

 

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　　'My mother works very hard. I am very lucky to have her. My life simply would not happen in the way it does without her. She provides me with a huge amount of support'.

 

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　　Alex's mother admits there have been difficult times in caring for Alex, especially at times when the disease is at its worst. But she is very proud of Alex. She said, 'He brings out the best in us all'.

 

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　　Now Alex is at King's College at Cambridge University. He still sings in the choir. And he is very busy studying music and giving concerts. He rides on his special vehicle all round the town. He speaks to many people about music. He does not like to talk about his sickness - but he has been the subject of two films on television. He says he enjoyed being followed everywhere by men with cameras. They followed him into hospital, into school, into college, and into the choir performances.

 

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　　Alex has now written a book, called 'A Passion for Living'. He wants people to know his story. He wants them to give money to organisations who are seeking a cure for Cystic Fibrosis. He wants this money to help other people who have the same disease.

 

　　And, above all, Alex Stobbs wants to live. His disease means that he could die tomorrow, but he wants to enjoy living today.

 

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　　'I want to show people that having CF does not mean sitting around feeling sorry for yourself. I think it is better to try to achieve things, not to keep thinking about what is bad about it all.'

 

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　　The writer of today's programme was Shelah Godwin. The producer was Nick Mangeolles. The voices you heard were from the United Kingdom. All quotes were adapted and voiced by Spotlight.

 

　　This programme and many more are on our website – http://www.radio.english.net This .programme is called 'A Passion for Living'.

 

　　We welcome comments and questions about our programmes. You can email us at [email protected], or you can leave comments on our website.

 

　　Thank you for listening to Spotlight today. Goodbye.