ICE SKATE FOR THE HONEY HOUSE
Ice skate with your friends for a good cause! We're having a skating party at the Port Jefferson Harborfront Rink on February 15, from 6 to 7:45, admission $15.00, bring your own skates or purchase rental for additional $5.00. Then, join us for an after-skate party upstairs at the Sail Loft, with music by DJ Henry and food prepared specially for this event by catering company Nosh, cash bar--Just $20.00 a ticket for dinner and dancing in a beautiful setting. It's the day after Valentine's--bring your sweetie, and help us build the Honey House for our little sweetie, 8 year old Brian Ilg of Patchogue. Brian was born with Dystrophic Epidermolysis Bullosa, a debilitating skin disorder. Described as "the worst disease you've NEVER heard of," the continuous blistering caused by this condition is disfiguring and painful; any kind of friction causes wounds to develop. Brian's care entails a daily, three hour-long dressing change of the bandages that protect his skin from injury and treat the wounds that affect 60% of his body.
We--Brian's nurses and friends--are building a portable medical treatment unit--a little house on wheels, with dedicated space for his medical care,separate from his family's living area, which will reduce the spread of infection. The house will have a walk-in whirlpool bathtub in which Brian can submerge himself to clean and gently debride his wounds, which 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.
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Reserve your tickets by calling 631-828-6682 or email MEmerson2000@gmail.com. If you can't make it but would like to help, try www.gofundme.com/honey-house. Follow us on our Facebook page, "Help Build the Honey House."