Alex was born with a rare genetic Mitochondrial disorder. He needs help with all daily living functions. He’s profoundly deaf and wheelchair bound. Despite his very complex needs, with the amazing help and support of Pace since Alex was 13 months old, we as a family (and most importantly, Alex) have learnt how to cope with and even excel at living, with this life limiting condition.
At 2 years old we were advised that Alex would probably not live past six. He’s now nine, which has amazed all his specialists and baffled the experts at Great Ormond Steet (GOSH). It has even been suggested by one of his specialists at GOSH that it is down to the total commitment, care and constant stimulation that Pace gives to him during his schooling. They gave us hope and confidence to move forward with Alex and help him to achieve things that no one thought possible. He now drives his powered wheelchair with his foot, signs with his feet and turns his pedals on his specially adapted trike. He’s been waterskiing, snow skiing, surfing and can even take my credit card out of my purse to give to one of his carers to pay for DVDs from Amazon!!! He does not let anyone ignore him and he’s achieved so much in his short life.
He’s really cheeky and he has an amazing sense of humour. We don’t know what the future holds for Alex but everyone who meets him falls in love with him.