Brae, a boy from South Croydon with a life-limiting condition called Ataxia Telangiectasia, has been selected on behalf of a charity, the AT Society, to appear on a BBC One Lifeline appeal this Sunday at 1.55pm, presented by Louise Minchin.
Croydon parents Siobhan and Brian were told that one of their twins, Brae, had Ataxia Telangiectasia, or AT, when he was just three years old. Compared to Broghan, his twin, Brae looked “wobbly” when he walked. When they received the AT diagnosis it was overwhelming for them.
“We were a wreck,” Siobhan, Brae’s mother, said.
“We just couldn’t compute what was happening to our lovely family. It’s not what any parent wants for their child, to know that the life you have as a family, your time together is limited.”
Ataxia Telangiectasia is a rare genetic disease which causes severe disability. It is reckoned that 1-in-250 people carry the AT gene. “The impact of AT on individuals and families is devastating,” the charity says.
Children born with the AT gene appear healthy until they are around two or three years old.
Soon their balance starts to fail, they need assistance to walk. By the age of 10, many are using a wheelchair and by the time they are 12 years old they may need help to eat and their health and immunity are deteriorating.
Children and young adults with AT are particularly prone to developing leukaemia and other cancers. It is unusual for a person with classic AT to live beyond 26 years of age.
Brae is now 14. After his diagnosis more than 10 years ago, the AT Society immediately provided Siobhan and Brian with a lifeline of hope when there was nowhere else to go. A home visit from the charity’s family support worker provided reassurance that they were not alone.
The AT Society has continued to be close by their side ever since, providing expert care and advice with a human touch.
When Brae and his family were faced with complex medical challenges, stresses over home adaptations to accommodate Brae’s changing needs, and confusion and worry about disability equipment in his active teenage years, they knew instantly who to call.
Brae’s family tell their story this Sunday lunchtime on BBC One.
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