The Charlie Gard Foundation aims to be the leading UK charity supporting children, adults and their families that have been affected by mitochondrial disease. We invest in pioneering research into viable treatments for mitochondrial diseases, and collaborate with professionals and experts from around the world to ensure we have every chance of finding that all elusive cure.
Charlie Gard Foundation
Daniel's Hydrotherapy Pool Campaign
Daniel suffers from a mitochondrial disorder and also cerebral palsy. We're raising funds for a hydrotherapy pool for Daniel, which will help him develop his muscle tone which he so desperately needs to ensure he has the very best quality of life.
Charity Registration No: 1176344
Daniel lives in Barnsley, a small town in Yorkshire, and was thought to be a happy healthy baby. At four months old it was suspected something wasn't right with his development and after months of appointments and visits to many hospitals Daniel was diagnosed with a mitochondrial disorder, for which we are awaiting a full diagnosis. He has cerebral palsy, his brain is damaged in three areas and he's failing to thrive. He hasn't gained much weight in over twelve months and he's struggling to stay at 9kg. His 3rd birthday is in September 2019, however, Daniel's muscle tone and development are that of a 0-6-month-old baby.
As a family we have tried to get him everything he needs but the cost is way beyond what we can do without support. We need to go private for his care as the wait is too long for a diagnosis and the current gene testing programme has stopped so we are hopeful this will enable us to find out what we are dealing with and help understand his needs for the future but this comes at a high cost. We are struggling to find the funds to get the equipment needed to make him comfortable day by day. Daniel cannot sit, stand or eat orally so he is peg fed. Daniel finds it hard to travel anywhere as he finds travelling in the car distressing even the shortest journeys to hospital are too hard for him so Daniel spends a lot of time at home. Daniel loves the outdoors and swimming/hydrotherapy but due to his MRSA it's difficult to take him anywhere, and we are now saving to get him a hydrotherapy pool of his own.
We are hoping to raise funds via this page for the hydrotherapy pool to help build his muscle tone and ease his pain. He will require a large operation if his hips don't form the muscle tone needed to hold them in place, which is normally gained by standing and he struggles to hold his head fully without support. With the help of hydrotherapy his muscles will strengthen and help him to do this for longer periods throughout the day.
We want to support Daniel so he is comfortable, has a good quality of life and enjoys normal day-to-day things as any child should.
We just want him to be happy and smile every day, feel loved, and get the best care we can for him whilst taking every day at a time and hoping the use of his own hydrotherapy pool will enable this to happen.
With your support and the support of the Charlie Gard Foundation we hope to achieve this.
Thank you for your support xx