Helping Brian Ilg, an 8-year-old Patchogue boy born with a debilitating skin disorder, is the focus of a fundraising campaign organized by three Stony Brook University Hospital nurses.
The nurses are trying to raise $45,000 in order to build a portable medical treatment unit for Ilg via the gofundme crowdfunding platform, who has Dystrophic Epidermolysis Bullosa. According to the campaign’s description written by Mary Emerson, continuous blistering caused by the condition is disfiguring and painful. The blistering can be caused by any kind of friction, which 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,” Emerson writes.
The treatment unit is described as a little house on wheels, with dedicated space for Ilg’s medical care separate from his family’s living area. The separation will reduce the spread of infection. The description says the house will have a walk-in whirlpool bathtub for Ilg to submerge himself clean and gently debride his wounds, which is said to reduce his bath-time pain by 50 percent.
According to the fundraising page, the “Honey House” as it’s being called costs $4,000 for the trailer, $3,600 for the windows and doors and almost $6,000 for the walk-in bathtub. Also on the list is to provide the structure a heating and cooling system, a power generator so the facility can work off-grid and during power outages, internet access and an entertainment console.
In a video interview with News 12, nurse Diane Brayer describes Ilg as an athlete only stopped by his bandages.
“He actually ran a mile for the Patchogue-Medford and he ran the entire thing on his own feet, he came across the finish line and was cheered on by all the kids who were running with him,” Brayer said.
Ilg himself said later in the video that he expects to move onto being a stunt double.
In addition to the gofundme page, the nurses are holding bake sales, selling candy bars and open mics to put toward the fundraising goal.
Click here to visit the full gofundme page for the Honey House. Progress on the house can also be viewed on its Facebook Page.