'An Old Soul': Long Island Teen Who Braved Butterfly Disease Dies At 17

PATCHOGUE, NY — When Arlene Costanzo Ilg took her newborn son, Brian, home from Stony Brook University Hospital, she was determined to do anything to keep him comfortable and happy.

She would feed him from an eyedropper to make sure he received every last drop of nutrition that his body could take.

His skin was so fragile pediatricians at Good Samaritan Hospital took notice of his compromised condition and they transferred him to the big U under watchful eyes. He suffered from the rare skin and connective tissue disorder commonly called Butterfly Disease but is also known by the medical diagnosis, Epidermolysis Bullosa.

His infant skin was as thin as the gossamer wings of a butterfly.

From then on, Arlene knew she had a special job in life.

"God gave him to me because he knew that I would be able to take care of him, and it was my job to just make sure he was happy," she said Wednesday. "I think I did that. I really do. I really think I gave him a happy life."

Brian died at Stony Brook Children's Hospital surrounded by his family on Sunday.

He had spent his life wrapped in bandages protecting sores on his skin. He carried visible wounds on his body that would make anyone wince. He carried them with grace and slogged on.

The disease dug in when he was in 6th grade.

A bone marrow transplant from his elder sister, Annalise, helped, but after he broke his back and suffered immeasurable pain several years ago, Arlene and Brian came to a decision under the circumstances by which he could be resuscitated, including a Do Not Resuscitate order.

If Brian's heart stopped, medical professionals would have to stand down and not administer chest compressions or defibrillator paddles. Both can easily break ribs and damage sensitive skin.

"It was a DNR, but more like, 'Don't hurt me,'" Arlene said.

His health began to decline.

Brian was semi-bedridden, and at one point, the family needed volunteers from the community to help mobilize him. They had a ton — from community members to volunteers from the Patchogue Ambulance Company.

Brian's bedroom was downstairs, right by the front door so that he could always look outside and see people coming and going. If his door was open, he was the first person anyone saw entering the house.

More recently, Arlene, an attorney who practices personal injury and medical malpractice, moved her home office into the dining room to be near ailing son.

Brian's father, Greg, who died from brain cancer in 2018, was an athlete who played every sport —golfed, went boating, and was an avid hunter. He did it all. Arlene believes Brian would have done the same had he not been trapped inside his fragile body.

"He never complained," she said.

The brave teen did not let his physical limitations stop him, either.

His plight drew massive support from the Patchogue community, with neighbors forming the group, Butterflies for Brian. It was started as part of a run-walk where participants adopted hand-made butterflies to help raise awareness about Brian's disease, as well as money to help with uncovered medical expenses.

But Brian never wanted to be associated with the Butterfly Disease community, Arlene said.

To him, the children were sick and he didn't see himself that way.

Instead, he channeled everything he had into video gaming.

And he had a great love for Marvel Comics, especially the master web slinger, Spider-man. Reporter Peter Parker's alternate ego was Brian's all-time favorite.

He loved catching up on the latest Marvel installments. His last viewing was the release of "Wakanda Forever" just before Christmas.

Unexpectedly, he fell ill with pancreatitis right after.

His family hoped he would be home for Christmas, then New Year's Day, and, finally, Little Christmas.

But when his pain increased — with him screaming out — there seemed to be little chance, so he was kept comfortable in his final days.

Arlene believes it was his cheery attitude that got him through his illness.

He was very mature for his age.

"He was wise beyond his years," Arlene said. "Brian had a super high IQ and he was smart as a whip."

People often expected that because of his physical illness, he was affected mentally also. That wasn't the case.

They would ask Arlene if Brian could talk, when no doubt he could, and with candor.

"Brian was the smartest," she said. "You know, he could talk circles around, you, and it was always, like, with one-liners."

He would come up with the most unexpected things. His family called them Brian-isms.

Upon learning about computerized tomography imaging, CT, or Cat Scan, when he was little, he questioned why anyone would want to scan a cat.

"He was always happy," she said. "He was always ready to crack a joke and surprise you."

Family friend, Dina Underwood of East Patchogue, has organized a GoFundMe page to help Arlene with funeral expenses.

"Brian was a gift to all of us," she told Patch. "Brian fought for his life, his entire life. He unified our community and reminded us of what is really important — love, family, and caring."

"His suffering has ended. May he rest peacefully," she said.

So far, Underwood's page has reached $2,555 of its $15,000 goal.

In a special Facebook message on Wednesday, Patchogue-Medford Superintendent Donna Jones made the announcement to the school district's community, saying it was with "a heavy heart and profound sadness."

"Brian was an amazing child with more courage than the most decorated warrior," Jones wrote. "He spent all the years of his short time on earth battling illness. Yet, in his passing, he has demonstrated the essence of victory in battle."

"I know that many of you personally know the family and will want to pay your respects," she said. "I also know that many others will want to pay tribute to this beautiful child and his family who has provided unwavering support to him throughout the years."

Jones asked that the school community to send thoughts, prayers, and condolences to Ilg's family.

"May he rest in perpetual peace and light, and may his beautiful character live on in the hearts and minds of our district," she said.

As news of Ilg's death spread in the community, heartfelt tributes began to pour in.

One supporter wrote that Ilg would "always" be in his heart.

A woman sent love, hugs, and prayers.

Yet another wrote that she and her family were "so saddened" to hear of Ilg's death, saying that her daughter went to River Elementary School with him, and although the family moved, she has fond memories of him, "as he was such a sweet boy."

When asked if there was anything that she wanted readers to know about Brian, Arlene said he did not want to be forgotten.

"He just wanted to be part of life," she said. "I think he felt trapped in his room. He definitely felt trapped in that bedroom. But he was very accepting of the fact that that's where he had to be."

When Brian was 16, he and Arlene spoke about his reaching 17, which he really did not see had any benefit.

Seventeen stinks, he told her.

"'Eighteen, now that is something,'" she recalled him telling her.

Brian will forever be 17 with a life most could not have lived as well as he did.

Visitation will take place at Ruland Funeral Home Chapel, 500 North Ocean Ave., Patchogue, on Thursday and Friday from 2 to 4 p.m. and 7 to 9 p.m. A funeral mass will be held for at 9:45 a.m. on Saturday at Our Lady of Snow Roman Catholic Church, 175 Blue Point Ave. in Blue Point, followed by committal at Cedar Grove Cemetery at 11:15 a.m.

For those who cannot attend, his funeral mass will be live-streamed by Vedette Unity Live on YouTube.

Editor's Note: Go Fund Me is a Patch promotional partner.