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Teen hit by rare disease thanks doctors at hospital

Devin O'Rourke of Levittown thanked doctors at Nassau

Devin O'Rourke of Levittown thanked doctors at Nassau University Medical Center for his care. Credit: Howard Schnapp

A Levittown teenager who spent more than a month at Nassau University Medical Center after contracting a rare skin disease last year returned to the hospital Friday to celebrate his birthday with the medical professionals who saved his life.

On Nov. 27, Eileen O’Rourke took her son Devin, then 14, to an urgent care center with sores in his mouth. If his condition worsened, they were told to take him to a hospital. The next day, O’Rourke woke up with “spots all over his body” and couldn’t breathe, his mother said.

O’Rourke was battling toxic epidermal necrolysis, also known as Stevens-Johnson syndrome — a rare but life-threatening autoimmune disease “where the skin actually peels from the body” like a scalding or serious burn, said Dr. Victor Politi, president and chief executive of Nassau University Medical Center. The condition also affects other organs, including the eyes, mouth and esophagus, Politi said.

Doctors suspect the disease, which can be triggered by seizure medications, painkillers and other drugs, was in O’Rourke’s case likely a reaction to an acne medication.

O’Rourke spent 38 days in the hospital, where he needed moment-to-moment care, couldn’t eat, drink or see, and shed the entirety of his skin, doctors said.

“He was as sick as a young man could be,” said Dr. Louis Riina, assistant director of the NUMC burn center. “The pain that he had to experience is incomprehensible for any of us.”

“There are some days we walked in and said, ‘He’s not gonna make it,’ ” said Dr. Peter Ciminera, director of NUMC’s pediatric intensive care unit. “But he did, and he fought, and he looks good.”

On Friday, O’Rourke, joined by family and doctors, returned to the hospital to celebrate his 15th birthday. The employees who cared for him sang “Happy Birthday” before he blew out candles on a sheet cake. O’Rourke and his mother also presented the doctors with plaques thanking them for their work.

“You never think . . . that something this bad would happen to you,” O’Rourke said. “Thank you. I’m extremely grateful.”

O’Rourke returned to Division Avenue High School on a truncated schedule at the end of February, his mother said. Despite missed time, he passed his Regents exams and will be in 10th grade this fall.

The teen has made nearly a full recovery, but he still must visit an eye specialist in New York City every week, his mother said. While O’Rourke “has a long road ahead of him,” his mother described him as a carefree, typical kid who enjoys baseball and spending time with friends.

“He’s back,” she said. “And he fought hard.”

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