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BBC Lifeline Appeal

The AT Society supports children, young adults, and their families whose lives have been shattered by a diagnosis of ataxia telangiectasia (AT) – a serious and complex, life-limiting condition, for which there is no cure or treatment.

Meet Brae, George and Rose and hear how the AT Society has helped to change their lives.

You can donate to us here https://atsociety.org.uk/donate/

Thankyou.

Meet Brae

Siobhan and Brian were told that one of their twins, Brae, had AT when he was just three years old. Compared to his twin, Brae looked ‘wobbly’ when he walked. When they received the AT diagnosis it was overwhelming: “We were a wreck. We just couldn’t compute what was happening to our lovely family”.

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 charity 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.

Meet George

George is 26. When he was 2 years old, a health worker noticed he was having difficulty standing up; 2 years later he was diagnosed with AT. AT effects every aspect of a child’s life, and the lives of their families. George is now fully dependent on his wheelchair and on full-time carers support which has been one of the hardest adjustments for him to come to terms with.

His mother, Michelle, witnessed how much the symptoms of AT and the degeneration of his physical abilities started to affect George’s mental health. She turned to the AT Society who were able to provide the family with practical and supportive advice, and with counselling to help George develop coping mechanisms to live with this rare condition. Over the years, the charity has also helped George and his family to attend its annual social weekend, where he has built up a support network of close AT friends. When they are together, no explanations are needed, everyone understands – there is a real strength in that.

Meet Rose

Rose is 11 years old and was diagnosed with AT when she was 6. She is the second generation in her family to have this genetic condition.

As her condition deteriorated Rose started to feel increasingly sad and isolated. Her friendships felt like they were falling away. She could no longer run, jump, and climb with her friends, and her school building and her friends’ homes became inaccessible to her. The AT Society were able to play a key role helping Rose’s teachers to understand the specific needs pupils with AT might require through their education. In consultation with the AT Society and her teachers, her parents worked to move Rose to a specialist school. It was a long, uphill battle, but starting her new school has been life-changing for Rose.

In her mother’s words, Rose is now ‘loving life!’ and feels more hopeful about a brighter future.

This brilliant charity supports children, young adults and their families whose lives have been shattered by a diagnosis of ataxia telangiectasia. It’s a rare degenerative condition that impacts several systems within the body, compromising the lungs and the immune system and affecting muscle control, coordination, mobility and speech. The AT Society makes a positive lasting difference to hundreds of families all over the UK by offering practical and emotional support from the moment of diagnosis and actively funding and promoting research for new and effective treatments that may one day lead to a cure.