$18K Raised for 8-Year-Old With Dystrophic Epidermolysis Bullosa

Four nurses came together to build a portable medical treatment to help treat an eight-year-old boy with a horrible skin disease.

Three Stony Brook nurses have come together to help eight-year-old Brian Ilg, of Patchogue, who was born with Dystrophic Epidermolysis Bullosa, one of the worse skin disorders that has been ever diagnosed. 

According to the Genetics Home Reference, this disease is a "genetic condition that cause the skin to be very fragile and to blister easily. Blisters and skin erosions form in response to minor injury or friction, such as rubbing or scratching." The reference goes on to say that blisters can form over the entire body and create scar tissue as they heal making it difficult to chew and swallow.  Additional complications of progressive scarring can include fusion of the fingers and toes, loss of fingernails and toenails, joint deformities (contractures) that restrict movement, and eye inflammation leading to vision loss. 

Currently, Ilg has been receiving daily care that includes a three hour-long dressing changed designed to protect his body from injury and help treat any wounds that could turn into a blister which is about 60 percent of his body. 

The nurses have decided to raise money for a portable medical treatment unit that would be a dedicated space for his medical care, separate from his family's living area, which will reduce the spread of infection. 

The group is doing everything is can to raise money to help this boy out. 

The page reads:

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.

To read more about him or to send in a donation to help them reach their $45,000 goal click here. or to learn more about GoFundMe click here.


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