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Wednesday
Nov072007

Recap: Muscles Weakening, 11-Year-Old Speaks Through Painting, Yazzy's at www.williamaverdult.com

She holds a painting of a mother, a large oval that fills nearly the entire paper, with a child at her feet, sketched in vibrant pink.

“I’m coming,” Ms. Kelib responds to a faint peep from her son in the living room. There, her son, Noel Isiais, sits on the sofa, legs stretched out straight.

He spends a lot of time on this couch. After a long school day sitting in his wheelchair, he holds the braces on his legs straight to keep the muscles from clenching.

When Noel was a toddler, doctors learned that he had Duchenne muscular dystrophy, a condition that causes muscle weakness and wasting. Duchenne mainly affects boys; symptoms appear between 2 and 6. Its victims must often use a wheelchair by age 12; many do not live past their 30s.

When he was younger, Noel could walk and ride a bike. But physically he was different from other children. “If I told him, ‘Jump’, he can’t jump. If I told him, ‘Climb,’ he doesn’t climb,” Ms. Kelib, 47, remembered.

Now, Noel, 11, gets around with a wheelchair; the progression of the disease seems achingly typical.

Noel is in fourth grade at Public School 242, where he attends regular classes. The Board of Education provides an assistant to counter his physical limitations.

“He is very smart,” Ms. Kelib said. “His handwriting is so beautiful.” She opens a folder of his homework, completed in Noel’s clear printing. This, too, will be lost in time. His right arm is weaker than it once was. Around strangers Noel speaks in a constricted voice, but his mother understands him immediately. His paintings, too, speak eloquently. Ms. Kelib has been saving them since he started bringing them home in kindergarten.

An immigrant from Ethiopia, Ms. Kelib is a mostly single mother to Noel. His father, Isiais Yohnnes, travels between Ethiopia and the United States. Noel and his mother receive $125 a month from his father’s Social Security, and his father cares for Noel when he is in New York. That helps, Ms. Kelib said. “When Noel’s father is here, I work full time.”

Ms. Kelib makes $10 an hour as a home health aide. She works part time, and is home when Noel returns from school. Noel receives $553 a month in Supplemental Security Income.

Ms. Kelib speaks gently and cries easily, but Noel has made her stubborn. “I never give up,” she said. “Since my son, he have this situation, I fight with everybody. I fight for my son’s right.”

She found an ally in UJA-Federation of New York, one of seven agencies supported by The New York Times Neediest Cases Fund. From the time of Noel’s birth, the family lived in a fourth-floor walk-up in Manhattan. When Noel could no longer walk, Ms. Kelib carried him up the stairs, two trips each time: one for him and one for his wheelchair. In July, Ms. Kelib and Noel moved into an apartment on the first floor of their building.

Her new rent is $650 a month, but before she could move, Ms. Kelib had to pay rent that she already owed. UJA covered $614.83 in back rent. In August, she received $500 in Neediest Cases money to help with furnishings. Ms. Kelib spent $165 on a bookshelf and dresser for Noel and the rest to frame 20 of her son’s paintings.

Karen Norden, project manager for homeless prevention services at UJA, said, “Funding for my program really is for housing and rent.” Neediest Cases helps with things her funds cannot provide.

“We wanted to do something to help the family,” Ms. Norden said. “At least home could be a place where they are comfortable.”

Noel still needs a hospital bed and a desk that fits a wheelchair, and, Ms. Kelib said, “The next fight is for a motor wheelchair.”

In the midst of all his needs, Noel’s paintings bring joy to his new home.

“I save it and I keep it,” Ms. Kelib said. “When it’s the right time, I put it in the frame. I wait for so long.”

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