Cohen Children's Medical Center sickle cell patients raise awareness with fashion show

Sickle cell patients at Cohen Children’s Medical Center in New Hyde Park strutted their way down a red-carpet runway Monday as the hospital hosted its third annual Shine the Light Fashion Show.

The fashion show brought families and the hospital community together to raise awareness for sickle cell disease, a group of inherited conditions that cause red blood cells, normally flexible and round, to take on the shape of sickles or crescent moons that can slow or block blood flow, according to the Mayo Clinic, which notes on its website the disease "most commonly affects people of African, Mediterranean and Middle Eastern descent."

Cohen Children’s Medical Center currently is treating more than 500 sickle cell patients, according to Banu Aygun, the hospital’s associate chief of hematology, who attended Monday’s fashion show.

Ten patients took turns walking down the red carpet, modeling formal attire like tuxedos or evening gowns, and engaging in quick-hit interviews with the event hosts as they finished. The show’s more than 100 attendees cheered and raised red and white pom-poms as each of the models-for-a-day made their way along the runway, often dancing to the music. The patients then took turns modeling casual clothing — graphic T-shirts, sneakers, shorts and skirts.

Dwight Parke, 16, of Valley Stream, and a patient at the hospital, told Newsday he has had sickle cell disease his entire life. He was also one of the models.

At first, Parke said, he was nervous at the prospect of walking the runway, but the upbeat and encouraging mood of the audience quickly won him over.

"As I walked through, or as I saw everyone, it really motivated me and gave me the energy of not feeling nervous anymore," Parke said.

His future interests include medicine, law, finance and engineering, Parke told an interviewer on the runway. He told Newsday that medicine interests him because of his interaction with doctors treating him at Cohen.

"It kind of ... gave an impression ... that this is something that I want to do in the future, to help people, to improve their quality of life and just improve their life overall," Parke said.

Blandine Alexandre, a nurse at the hospital and the organizer of the event, was on the verge of tears as she watched the young sickle cell patients and their parents momentarily take their minds off the disease.

"The parents, the children, they’re so tha nkful, and I really should be the one to be thankful, because this is a delicate time in their lives," Alexandre said.

Aygun said the seemingly healthy children and teenagers walking down the runway served to raise awareness of the disease.

"We don’t know they have sickle cell disease, but they’re among us," Aygun said. "They live with the disease every day. They know what it means."

Faith Barclay, 43, of Rosedale, Queens, held her 2-year-old son’s hand at times as he walked down the runway. Her son, Laurence Barclay-Belfon, danced as the audience cheered him on. Laurence was diagnosed with sickle cell disease soon after his birth, Barclay said.

"I think it’s so amazing that he’s comfortable and happy here," Barclay said. "When he comes here, he’s not afraid, and he knows that people here are going to help him, and that’s what’s the most important thing, for him to feel supported when we go through those difficult times."