Eight year old Brian Ilg of Patchogue 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 are building a portable medical treatment unit for Brian--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 . 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.
This project is entirely nurse-driven--we've had a lot of time to assess this patient and his needs. Most of the funds we've raised have come from nurses and even our builder, Robert Moore, is on the job because of a nurse--he received a kidney from a nurse 13 years ago, after 4 years on dialysis, and now he's paying it forward by building this house.
The trailer was $4400.00, the windows and doors, $3600.00 and the walk-in bathtub is almost $6000.00. The house requires a heating and cooling system; when Brian is wrapped in his bandages, it's as if he were in a winter coat, and he needs a cooler environment. When he's unwrapped, he's at risk for hypothermia, and needs a wamer climate. We want to provide a generator so that the facility can be used off-grid and in case of power outages. We'd like to wire the house for internet access and provide Brian with an entertainment console--a flat screen TV on an articulating wall mount so Brian can watch while soaking in the tub or while dressings are being applied. He'd love an xbox! We're selling candy bars and holding bake sales and open mics but we need your help.