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Brian Ilg, Patchogue-Medford student who battled butterfly disease, dies at 17

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The Patchogue-Medford schools community is mourning the loss today of 17-year-old student Brian Ilg, who struggled his entire life with a rare skin disease that caused the Patchogue teen to constantly cope with open wounds across his body.

Brian died on Sunday after his long battle with butterfly disease. Scientifically known as epidermolysis bullos, the disorder left Brian’s skin as fragile as butterfly wings, susceptible to tearing and blistering at even the slightest touch.

The high schooler is being remembered for his bravery and enduring smile.

“Brian was an amazing child with more courage than the most decorated warrior,” Patchogue-Medford School District Superintendent Donna Jones said.

“He spent all the years of his short time on earth battling illness,” she continued in her statement posted on Facebook. “Yet, in his passing, he has demonstrated the essence of victory in battle.”

Brian’s grueling journey with epidermolysis bullos — which was immediately evident at his birth when nurses wiped the blood from his body and his skin peeled off — is documented on the website “The Life of Brian.” Constantly wrapped in gauze and bandages, he would routinely wake up with blood-stained pajamas, caused by the friction of sleep.

The medical supplies needed to treat Brian — whose dressings needed to be changed daily — added up to tens of thousands of dollars a month.

Brian’s medical treatments and touching life moments have also been logged in heartfelt posts on the Facebook page “Butterflies for Brian.”

His mother Arlene reported that Brian was surrounded by his mom, his older sister Annalise, and other family and friends when he passed on Sunday at Stony Brook Children’s Hospital. He was admitted to the hospital on Dec. 22 with pancreatitis, she said.

Brian’s mother said in a post at “Butterflies for Brian” that “heaven gained one of the most beautiful souls to grace us. Always 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. 🦋💕🦋,” Arlene Ilg added about her son, who was preceded in death by his father, Greg.

In 2019, the Patchogue-Medford Hall of Fame recognized Brian and his family with the Sean Patrick Dixon Hall of Fame Raider Courage Award, an honor named for a Patchogue-Medford student who . Sean courageously fought a rare form of bone cancer before his passing in 2017.

“His fight with EB was a long, painful, horrible one, yet he handled it with grace and a smile,” reads a GoFundMe page dedicated to raising money to offset funeral costs for the Ilg family. “Brian was the true definition of a hero that fought EB with strength, bravery and a sense of humor. He brought joy to everyone who knew him.”

Funeral services for Brian Ilg

A funeral Mass will be held for Brian at 9:45 a.m. on Saturday, Jan. 14, at Our Lady of Snow Roman Catholic Church, 175 Blue Point Ave. in Blue Point. Visitation will take place at Ruland Funeral Home Chapel, 500 North Ocean Ave. in Patchogue, on Thursday, Jan.12, and Friday, Jan. 13, from 2-4 p.m. and 7-9 p.m. on both days.

Top photo: Source: Facebook