Source: New York Daily News
John Hudson Dilgen, 16, who is afflicted with a rare genetic skin disease, and his parents, John Sr., a middle school teacher, and Faye, a physical therapist, are home for the holidays in a brand-new, handicapped-accessible house in the Tottenville section of Staten Island6, courtesy of the Stephen Siller Tunnel to Towers Foundation.
The teen suffers from epidermolysis bullosa, or EB, a genetic disorder that causes his skin to blister and tear easily — and is so painful he hasn’t been to school for two years.
The family had been living in a 1910 Victorian home that wasn’t wheelchair-accessible, nor set up for someone with the teen’s special needs, and the cost of refitting would have been prohibitive.
“On the first floor of my old house, I wasn’t even able to get from the living room to the bedroom without the help of a nurse or my parents,” the teenager said. “I literally just went into my new elevator, and went to bedroom, and my bedroom is connected with my parents.They are right on the other side. It’s very comforting.”
With the help of foundation — named for a firefighter who died in the 9/11 terror attacks on the World Trade Center — the Dilgens’ new home now has doors wide enough to fit John Hudson’s wheelchair, an elevator, a ramp and a special hydrotherapy tub for his therapeutic baths.
The foundation normally raises money for 9/11 first responders and soldiers, but they heard about the family and were moved by his plight. “This is where Stephen grew up with seven siblings,” Stephen Siller said. “John’s a Tottenville kid. When you hear what this family went through, how could you not do something? And he’s a great kid. It was so warranted and so necessary.”
The foundation raised hundred of thousands of dollars for the project and brought in the Blue Star Group of Staten Island to do the construction. They own the new home mortgage free, while the foundation has taken title of the Victorian, which will be sold.
The teen said he had no idea a new home was even in the works. “Oh my god,” he gushed, hours after first entering the house. “This is insane. I truly never could have imagined anything close to this.”