Hero's funeral held for young advocate of rare disease research on Staten Island
STATEN ISLAND, New York (WABC) -- A hero's funeral was held Thursday on Staten Island for John Hudson Dilgen, a staunch advocate who advanced medical research.
Dilgen was celebrated as an honorary firefighter at Our Lady Help of Christian's Church.
He had a rare and painful genetic skin disorder known as "EB"
"He dystrophic EB, probably one of the worst, he would probably never be able to help him, but he knew by going into the trials, which were sometimes painful, that it would help somebody else," CHECK QUOTE
At just 14, he started raising awareness on YouTube.
Dilgen also inspired volunteers to hold fundraisers, including a Walt Disney World marathon.
He even took part in medical drug trials.
"He knew by going into the trials, which were sometimes painful, that it would help somebody else," said family friend Gerard Chipura.
Dilgen died this past weekend at his home in Tottenville. He was 23 years old.
Staten Island Borough President Vito Fossella released a statement on Dilgen's death.
"John was a true inspiration whose strength, courage, and kindness touched countless lives. Despite facing challenges, he lived life with purpose, raising awareness for Epidermolysis Bullosa and advocating for others with unwavering determination. He will be remembered for his resilience, his spirit, and the light he brought to so many."
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