help us transform lives with genetic testing
'Before my son Aidan had a genetics test he had quite a poor quality of life... Now, he’s a different person. With your help, more people can regain their lives through genetic testing.'
Aidan McKendrick had the first of what was to become a lifetime of seizures at the age of 10 months. Despite a cocktail of drugs, Aidan’s seizures remained uncontrolled and his awareness of the world declined. At the age of 27, Aidan moved into supported living, but he spent much of his time in and out of hospital. He was in a critical state.
Watch Aidan's story
Thanks to the amazing progress that has been made in diagnosing epilepsy by decoding a person’s DNA, Aidan is now able to take the correct medication which has turned his life around.
Aidan's mum, Anne-Marie: 'On four occasions they had to put Aidan into an induced coma. I was twice asked if I would sign a ‘do not resuscitate’ consent form for him, but I refused.'
Aidan’s consultant neurologist decided to seek the advice of Professor Sanjay Sisodiya, Director of Genomics at Epilepsy Society. He had heard about Professor Sisodiya’s work looking at genetics as part of the diagnostic process and he thought it might help to understand Aidan’s condition. Professor Sisodiya suspected that Aidan may have Dravet syndrome, a severe form of childhood epilepsy that usually begins in the first year of infancy. He recommended that Aidan’s DNA be tested for specific genetic mutations which are known to cause this syndrome.
Aidan was brought to Epilepsy Society and underwent diagnostic tests under the care of Professor Sisodiya. These showed that, as suspected, there was a genetic mutation underlying Aidan’s seizures. The diagnosis was life-changing. The drugs Aidan had been taking were making his seizures worse, so Professor Sisodiya recommended a change to a more suitable combination. Aidan is now looking better than we have seen him in a long time. He’s also now engaging with the world and the people around him.
At Epilepsy Society we are undertaking a genomics research programme to help us understand the causes of epilepsy.
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