Hazel O'Hare
Saving Ryan's Life with Fight For Alfie
Fundraising for Fight For Alfie
Story
This is Ryan's Story:
While going for his pre-school jabs at the age of 3, the health visitor noticed his walk wasn’t quite right. At this time, I didn’t think much of it. Just that he had his own way to move and honestly, couldn’t be bothered to lift his feet properly. This was around October 2013, where he was then sent to physio for a session which resulted in blood tests at Daisy Hill Hospital. Before all this, me and his daddy didn’t think it was too serious; more just an issue with how his legs where possibly growing. But then the word Duchenne was mentioned... This was something neither of us had ever heard of, which actually made things even more confusing at this time and especially heartbreaking as we were informed it was 100% fatal with currently no treatment or cure...
The next day, on the 7th March 2014, Ryan was officially diagnosed with DMD, just months shy of his 4th birthday. On that day, our lives changed forever....
Ryan is now 10 years old and will be turning 11 in July. We don't know how long we have left...
Unfortunately due to the progression of this fatal disease, Ryan is now confined to a wheelchair; but we are now looking hopeful. With the support of Fight For Alfie, we want to ensure Ryan is part of the fight against Duchenne and hopefully his body and life benefits from the treatment. But most importantly, that it can prolong the time we have with him, as long as possible; as no parent should outlive their child.
As an official member of Alfie's Army, Ryan will participant in their study Project Care for the Rare; which aims to provide preventative treatment to boys with DMD. Unfortunately, the boys are required to recieve this treatment every 3 months in order to stop progression and there is a cost involved. We now need your help to save our child's life...