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6 January 2017, 15:53 | Updated: 11 January 2017, 09:25
Ataxia telangiectasia affects patients’ movement and coordination and weakens the immune system. A few months before his death, Rupert Prokofiev spoke to Classic FM about his experience of the disease.
In October 2016, Rupert Prokofiev, a descendant of the composer Sergei Prokofiev, came to Classic FM with his brother Gabriel to speak to John Brunning about how ataxia telangiectasia has affected him and the help of the A-T Society. Rupert tells his story in the video above.
Just a few months after he appeared on Classic FM, it has been announced that Rupert died on January 2nd, aged just 31. The A-T Society said:
“It is with enormous sadness that the A-T Society learned of the death of Rupert Prokofiev.
“Rupert, the grandson of composer Sergei Prokofiev, was recently interviewed on Classic FM with his brother, composer Gabriel Prokofiev, as part of Global’s Make Some Noise Day.
“Rupert, who was 31, had done very well to reach that age, affected as he was by ataxia-telangiectasia (A-T), a condition for which the average life expectancy is 26. Despite the enormous challenges the condition brings, in terms of physical disability and health problems, Rupert had an enormous enthusiasm for life, which shone through in his interview.
“His positive attitude and his determination to live the life he wanted and get involved with anything he could was an inspiration to many people, whether they had A-T or not. He spoke up for people with A-T and other disabilities and showed how you could live a full and active life beyond the limits of your condition.
“Rupert truly embraced his situation and his life with A-T. He had little interest in research, saying: ‘If I didn’t have A-T, I wouldn’t be me’.
“Although his A-T made it difficult for him to read and impossible to write, Rupert completed a degree in Digital Media at Canterbury. He maintained his interest in film, becoming a member of the British Film Institute and later enrolling for a course in graphic design.”
Ataxia Telangiectasia (A-T) is a complex and rare condition. In fact, A-T is so rare that it affects around four in every million children – and sadly, there is currently no cure.
A-T affects those who have it in many different ways, but it often impacts on their coordination and movement, weakens their immune system and ability to fight off infections, and can significantly increase their risk of cancers. Most children with A-T need to use a wheelchair by the age of 10, and the condition is so complex that no two people will have exactly the same symptoms or experience.
We’re proud to be able to support the work of The A-T Society – a small charity providing support to young people and their families living with the condition across the UK. Young people like Alecia, who attends the activity weekends organised by the charity.
Here, she’s given the opportunity to meet up with other teens living with the same condition, and it’s a time when she can really relax. She said: “You don’t feel lonely when you are with other people who have A-T, I’m just a normal girl.”
Global’s Make Some Noise will help to fund the charity’s family support service, which will help families living with A-T, just like Alecia’s. We’re really proud to be able to support this vital and valuable service, as without it, families would be left to cope alone.