Find more information on: www.gofundme.com/honey-house
If you've driven down Norwood Avenue in Port Jefferson Station in the last month, you've probably noticed a little construction project being built in our front yard--here's the story:
We are building a portable medical treatment unit for Brian Ilg, age 8, who was born with Epidermolysis Bullosa, a terrible blistering skin disorder--a little house on wheels, with dedicated space for his medical care, which will reduce the spread of infection. Most importantly, the house will have a walk-in whirlpool bathtub in which Brian can submerge himself to clean and gently debride his wounds, which we estimate will reduce his bath-time pain by 50%-- there's no drug we could give him that would provide that much pain relief; it's a safe, effective, non-narcotic solution to the every-day agony caused by bathing. Another advantage to this little house is the fact that it's on wheels--it can go wherever Brian goes! The house is being built on a 20' long, 8' wide double axle trailer. Brian requires a three hour daily dressing change to treat and protect the wounds that cover 60% of his body.
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We're holding a fundraiser this Saturday, October 12, at the Country Corner in Setauket, 270 Main Street, from 7 pm to 11 pm. The owner, Ben Saraydarian, is donating a portion of the night's food and bar profits to the event; we'll have live music, special auctions, AND the Honey House will be there, so you can see your contributions in action! You can also donate on-line at www.gofundme.com/honey-house. One little boy wrestles with this terrible disease every day; we can show him he's not alone, and help ease his pain and improve the quality of his care in a very tangible way. You can track our progress at www.facebook.com/honeyhouse2013.
