Dilgen, 15, has been bravely battling a rare skin genetic disorder called Epidermolysis Bullosa. “EB,” which strikes only about 100,000 Americans, makes his skin incredibly fragile – the slightest touch can make it blister and tear. There is no cure for EB, only treatment, which consists of daily intensive bandaging, medication and medical care.
Today, a crowd of neighbors, supporters and Foundation staff gathered outside to watch as the Dilgen family cut the giant ribbon wrapped around their new front steps and take a first look at the inside of their new home.
For the family, this is so much more than a house. Inside are a number of features that will improve Dilgen’s daily life. The bathroom next to his room features a special hydro-therapy tub, which will make bathing a less painful and help his skin heal faster. Every day, nurses have to wrap Dilgen’s body in bandages, leaving only his head, hands and feet exposed. The new home has a medical treatment room specifically designed to facilitate this type of care.
The home is handicap accessible, complete with a ramp leading to the front door, automated doors and an elevator traveling between all three floors. The home also features smart home technology – the lights and thermostat can be controlled remotely via smart device.
This home came together with the support of various local Staten Island businesses and generous donations by the community and donors from across the country.
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