An American man is hiking his way around Ireland to raise funds for a five-year-old Tyrrelstown boy who has a rare and fatal genetic condition.
Dylan Finglas is one of just 60 patients in the world diagnosed with Multiple Sulfatese Deficiency (MSD), which affects the body and central nervous system.
His parents, Alan and Michelle, are fighting to raise the €2 million needed for vital research in the US that could lead to clinical trials to find a cure for the disease.
John Ewen, whose daughter Barbie was born with MSD and died two years ago, has already walked from Dublin to Galway raising money along the way.
The 71-year-old said: “I’m raising funds so that it doesn’t have to be a death sentence. I feel an obligation to help parents in the same situation as I was in.”
John, who has a strong Irish heritage, struck up a friendship with Dylan’s dad, Alan Finglas, and hopes his gruelling challenge will help the MSD Action Foundation – otherwise known as SavingDylan – campaign.
Alan said: “At 71, what an incredible thing to do. John knows we are on the road to treat and cure MSD but need more help, which is why he is doing it.”
Dylan was the youngest person in the world to be diagnosed with the rapidly degenerative disease when he was just two years old.
Sufferers develop breathing difficulties, lose their sight, hearing, the ability to walk, to swallow and their organ functions deteriorate and eventually fail. Most do not survive beyond the age of 10.
Alan said: “We need more support to get clinical trials; we have to keep moving forward.”
To donate, visit the donations page.
You can track John’s progress on Facebook.