Staten Island Community Wants School Elevator for Boy With Rare Disorder - NBC New York

Staten Island Community Wants School Elevator for Boy With Rare Disorder



    SI Parents Fight for Student With Disorder

    A group of parents on Staten Island have come together in an effort to help a student with a rare genetic disorder, with hopes of also helping many more along the way. Checkey Beckford reports. (Published Tuesday, Feb. 19, 2013)

    A Staten Island community is rallying to build an elevator at a middle school to accommodate a boy with a rare genetic disorder.

    John Dilgen, 10, was born with a condition that causes his skin to blister with wounds that resemble second- and third-degree burns.

    The fifth-grader is constantly covered in bandages, and the wounds on his feet are sometimes so bad he requires a wheelchair to go to school. 

    "I don't get bruises," the boy explained. "I get blisters, wounds."

    Fortunately, his elementary school is right across the street and has a wheelchair ramp. 

    "Living across the street from the school turned out to be a blessing," said his mother, Faye Dilgen. "He can get there whenever he feels well enough to leave in the morning. He can come home if he's not feeling up to it." 

    John will start middle school next year, but because the one across the street, IS 34, doesn't have a ramp or an elevator, he'll have to take the bus to another one 20 minutes away. 

    The Department of Education said there's not enough money in the budget to install an elevator this school year and will revisit the issue next year. But there's no guarantee and by then, it will be too late: John will already have started a new school.

    "It's hard to start over with a new group of kids," said Faye Dilgen. "He's known these kids for six years, they accept him, they're his friends." 

    "Going back, going to a new school, no one knowing about me, that would be very hard," said John. "Because that means they would be rough again, they wouldn't know how fragile I am." 

    Faye Dilgen and other parents in the community have banded together to gather a thousand signatures to get an elevator at IS 34. They're also trying to raise $250,000 in private funds to pay for the project. So far, they've raised only $3,000, but the parents say they're not giving up. 

    "This elevator will not benefit only John but the whole community," said one mother. 

    Get the latest from NBC 4 New York anywhere, anytime

    • Download the App

      Available for IOS and Android