A 15-year-old boy from Burntwood is now more self-sufficient, thanks to a generous donation from Simon’s Heroes children’s charity.
Daniel Ball suffers from Duchenne muscular dystrophy (DMD), a genetic disorder that causes muscle weakness and wasting. The condition largely affects boys, who are often diagnosed before the age of five. There are about 2500 cases in the UK and 300,000 sufferers worldwide.
Daniel is a full-time wheelchair user and is now losing upper body strength. He relies on his family for personal care and help with everyday activities and has one-to-one support at Chase Terrace Academy, where he studies maths, English, history, sociology, French, chemistry, biology and physics.
“Daniel was officially diagnosed aged 4 and a half,” his mum Samantha explained, “he was falling over a lot, was unable to jump and could only climb the stairs on his hands and knees. We thought he may have an inner ear problem, but the doctor performing his hearing test noticed his big calves and his walking gait, so she referred us on to the community paediatrician who then diagnosed Dan and ordered blood tests to confirm. We had never even heard of the condition before and it was a devastating diagnosis.
“Daniel’s condition has not impacted on his cognitive function; in fact he is a very bright young man and enjoys his schooling. He does have control issues and struggles with change, but for Dan the impact is mostly physical.
“Daily tasks for him, such as bathing and dressing, are a challenge and we are looking at ways we can give him more independence in the house, especially as he gets older.
“We approached Simon’s Heroes to see if they could help fund a specialist height adjustable wash basin with remote access which he could control himself. Being able to do something that is an everyday task is very encouraging and positive for him and the sink would go a long way in supporting independent living for Daniel.”
Despite the challenges Daniel faces, he enjoys playing Powerchair football for The Burton Albion Chariots, a team run in partnership with St George’s Knights, for players aged 8-80, with physical disabilities. He is also an ambassador for the Variety Club of Great Britain, a charity that offers support for disabled and disadvantaged children. The charity gifted Daniel his power wheelchair which allows him to play for the club, a pastime that he cherishes.
Samantha added: “Daniel attended a star-studded celebration for Cliff Richard’s 70th Birthday hosted by the Variety charity and spoke about how the charity had funded his sports chair and how positive the sport is in his life. This was in front of approximately 500 people and the evening raised £125K for the charity. A very proud moment for all of us.”
“We were delighted when Simon’s Heroes confirmed they could purchase the sink. It will provide so many benefits and help his confidence too. Having a vital aid like this will give Daniel some privacy and much needed independence. He will be able to use it for years to come. Words cannot express our gratitude. Thank you for helping our inspirational son.”
Author: C Abbott.
