New home for holiday
9/11 fund helps S.I. neighbors whose son needs special care
It was a gift of a lifetime, and for a Staten Island teen, reason for a true Thanksgiving.
John Hudson Dilgen, 16, who is afflicted with a rare genetic skin disease, and his parents, John, a middle school teacher, and Faye, a physical therapist, on Wednesday got a first look at their brand-new, handicapped-accessible home in Tottenville, 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.
Frank Siller, the foundation’s president, said turning the home over to the teen and his family the day before Thanksgiving was “a perfect day to give to say the least.”
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.”
The family has previously 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’ve 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 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.
“They heard our story and how we were trying to renovate the home,” Faye Dilgen, 54, said. “They reached out to us. They said they would be happy to help out.”
Siller said he got involved about a year ago “because he’s in the community.”
“This is where Stephen grew up with seven siblings,” 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.
The Dilgens now own the new home mortgage-free, while the foundation has taken title of the Victorian, which will be sold.