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Brian Ilg, of Patchogue, died Sunday, Jan. 8, at age 17, according to his obituary.
It marked the end of what relatives described as a “long and painful” journey that the teen “handled with strength, bravery, and a sense of humor.”
Ilg was born May 20, 2005 and was diagnosed with a severe form of epidermolysis bullosa, more commonly known as butterfly disease. The rare disorder leaves skin fragile - like butterfly wings - and susceptible to blistering and bleeding when rubbed up against. There is no cure.
“The slightest bump or scratch can tear Brian’s skin open,” reads an excerpt from the website “The Life of Brian,” which documented the boy’s journey.
His parents said the only available treatment was a daily dressing of bandages and gauze, similar to what is done for burn victims. The long and painful process of unwrapping, bathing, and bandaging sometimes took more than two hours.
“Both of us almost lost our jobs because we were doing dressing changes and we didn’t have nurses at the time,” Ilg’s father, Greg, is quoted saying.
The teen was surrounded by family when he died Sunday at Stony Brook Children’s Hospital, his mom Arlene Ilg said on Facebook.
He had been admitted to the facility on Dec. 22, with pancreatitis, Greater Long Island reports.
“Heaven gained one of the most beautiful souls to grace us,” Arlene Ilg said. “Alway made me proud. Always made me laugh. Always ready with a smile. Always with a witty remark.
“You have touched so many and will be with us always. You are free my sweet baby. I love you. Daddy has you now.”
News of the boy’s death was shared by the Patchogue-Medford School District, whose superintendent, Dr. Donna Jones, described Ilg as “an amazing child with more courage than the most decorated warrior.”
“May he rest in perpetual peace and light and may his beautiful character live on in the hearts and minds of our district.”
A memorial visitation is planned from 7 to 9 p.m. Friday, Jan. 13, at the Ruland Funeral Home in Patchogue. A funeral mass will be held at 9:45 a.m. Saturday, Jan. 14, at Our Lady of the Snow RC Church in Blue Point.
A GoFundMe campaign created to help the boy's family with memorial expenses had raised nearly $9,000 on a goal of $15,000 as of Friday, Jan. 13.
Click here to support the GoFundMe campaign.
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