Nurturing Musical Dreams in a Wheelchair

By JENNIFER MASCIA

Published: January 1, 2011

At the flip of some switches on his computer, Jason Celik’s room fills with a melodic hip-hop beat. After a few bars, his older brother’s sleepy, streetwise rhymes kick in, reminiscent of the young rapper Drake. Their father, Muzzafer, who is from Istanbul, stands in the background and proudly bobs his head, delighted by the strains of traditional Turkish music woven into the track.

“ ‘Leylim Ley,’ ” Mr. Celik said, identifying the song his son has sampled.

Jason Celik’s musical talents are all the more impressive given that he is able to move only his right hand and two fingers on his left. Now 21, he is paralyzed as a result of Duchenne muscular dystrophy, characterized by the progressive loss of muscle strength.

When he was a toddler, his mother, Ann Marie, 48, recalled, “I noticed he had a problem going up the stairs.” By the time he was 7, he was in a wheelchair.

Respiratory and cardiac problems are common with Duchenne, and when Jason Celik was 18, his respiratory muscles were so weak that he was intubated for six weeks and nearly died.

“Six weeks of fighting,” Ms. Celik calls it, and during that time she clashed with insurance companies and doctors who wanted her son to have a tracheotomy tube permanently inserted.

“By the grace of God, he’s been O.K.,” Ms. Celik said.

His room, littered with medical devices, betrays how completely his life revolves around his illness. A cough-assist machine sucks phlegm from his lungs when his muscles are too weak. Without it, he would be plagued by bronchitis and pneumonia. He wears a brave smile, but he cannot scratch his own itches, use the bathroom without help, roll over in the middle of the night — his mother sleeps next to him so she can help with that — or haul himself into the shower. His musical collaborator and brother, Peter, 24, helps him to do that.

“But as God as my witness, he never complains,” Ms. Celik said as her husband nuzzled Jason’s cheek.

She added, however, “Jason is a man, and he wants to retain his dignity and have a shower.” She described plans to install a rolling shower in one of the bathrooms.

More drastic renovation was required before the Celiks could move into their four-bedroom house in Cedarhurst on Long Island. Doorways were widened for her son’s wheelchair, and a sturdy wooden ramp was installed on one side of the house. It has been a vast improvement over the two-bedroom apartment the family shared in Elmont, which had holes in every wall from being hit by the wheelchair.

The Celiks needed space, but it was not until they found a program called Partners in Dignity at FEGS Health and Human Services System that they imagined state funds could pay for their relocation and home renovations.

At the agency, the Celiks learned of the Nursing Home Transition and Diversion Medicaid Waiver Program, which grants money to people with disabilities so they can alter their houses to accommodate their needs.

Finding the house was difficult because landlords are often unwilling to accept the subsidy or to have their properties modified, especially since the state does not pay to have the work undone if the disabled tenant moves out, said Lori Hardoon, the director of Partners in Dignity.

“Thank God for this grant, because, quite honestly, we never would have been able to move in here,” said Ms. Celik, a 23-year veteran of the United States Postal Service.

FEGS is a beneficiary of UJA-Federation of New York, one of the seven organizations supported by The New York Times Neediest Cases Fund. The fund contributed half the broker’s fee, or $1,190.

Ms. Celik home-schooled her son, who taught himself how to produce music with the help of computer programs.

“He’s a real go-getter,” she said. More than anything, he wants a music internship. A framed print hanging above the futon in Peter’s room, which doubles as a music studio, reads, “Find your stage door and open it.”

“People aren’t very receptive,” Ms. Celik said, gesturing to Jason in his wheelchair. “But they don’t know just how much he can really do.”

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via Nurturing Musical Dreams in a Wheelchair – Neediest Cases – NYTimes.com.