Staten Island teen with rare skin condition thriving in new custom home

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Tuesday, December 11, 2018
Staten Island teen with rare skin condition thriving in new custom home
Michelle Charlesworth received a special home tour from Staten Island teen John Hudson Dilgen.

TOTTENVILLE, Staten Island (WABC) -- A teenager with a rare skin condition has settled into his new Staten Island home and it is now helping him to thrive like never before.

John Hudson Dilgen gave Eyewitness News a tour of his new smart home on Tuesday. The 15-year-old has epidermalysis bullosa, a genetic and extremely painful skin condition he has had since birth.

Thanks to the custom home from the Tunnel to Towers Foundation, he now has more freedom and comfort -- including an elevator and a new treatment room for painful bandage changes and baths that take up to two hours.

One of the best things about the new house is he can now move around and do whatever he wants, when he wants.

"It's awesome, it's so nice I can move freely about my house, go upstairs to my room without needing any help or anybody asking 'where are you going?'" Dilgen said.

He also has a new ramp, his own bedroom and remote controls to run fans, speakers and lights around the house. He even showed off his heated, remote-controlled toilet.

He's also cooking, which he loves, and he has even put on six pounds since summer.

Dilgen is using medical marijuana, prescribed by a doctor, which relieves his constant skin pain and muscle cramps.

"I can honestly say it's been helping a lot with my appetite, eating and it helps you calm down and mellow out a little bit," Dilgen said.

His custom home and new medication are making his life so much better.

"It gives a day more quality, it gives his space more freedom, and in doing that, he's actually sleeping better, he feels better, he's happier and all of that together adds up to something I can't even - it's not tangible," his mom Faye Dilgen said.

It all adds up to a pretty wonderful holiday. Dilgen doesn't even really have a Christmas list this year because he doesn't know what to ask for now.


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