Bel Air High teen manages disability with guts, brains

The Baltimore Sun

Ofek Cohen leaves a lasting impression on people.

A junior at Bel Air High School, the 16-year-old has a 3.8 grade point average and was recently inducted into the National Honor Society. After graduation, he wants to attend the Massachusetts Institute of Technology.

Although he excels academically, he does it from an electric wheelchair, with the assistance of an entourage of caregivers and teachers.

"I'm not able to do much on my own," Ofek said with a shrug. "I'm very weak. I can't walk or write or pick things up. I need help doing everything."

But Ofek has never let his physical limitations hold him back. He was diagnosed with Type II spinal muscular atrophy, a hereditary disease of the muscles that affects 1 in 6,000 children.

The disorder causes a loss of motor neurons in the spinal cord that results in weakness and wasting of muscles used for crawling, walking, standing and sitting up. There is no cure for SMA, and treatment consists of managing the symptoms.

Tom Crawford, a pediatric neurologist at Johns Hopkins Children's Center who met Ofek about 15 years ago, said he hasn't changed much since then.

"Ofek is almost the same, as far as what he can do for himself, as he was when I met him," Crawford said. "He is profoundly weak. He can't do something as simple as bringing his hands up to his face."

However, Ofek doesn't dwell on what he can't do, said his mother, Michelle Cohen-Hammond. Instead, he focuses on what he can do, she said.

"Ofek is like a little Michelangelo," said Cohen-Hammond. "He's self-taught. He has an amazing mind. Some kids with SMA grow up with parents who bring the world to them. But when Ofek was little, I took him out into the world."

On one occasion, she wanted Ofek to know what it would feel like to stand up, so she put him in a standing frame and took him to the mall, she said.

Perhaps his biggest asset is his memory, which comes in handy when he engages in one of his favorite pastimes -- chess.

Unable to participate in high school sports, Ofek wanted to do something competitive, he said. He had taught himself how to play chess, but he wanted to take it to the next level.

He helped start a chess club at Bel Air High, but it was short-lived because the teacher who sponsored the club became ill. However, last year a chess tournament was started in the county, Ofek said. He won the first tournament, and then won again this year.

To help give his game a little boost, Ofek said he received tutoring in chess last year from Dan Heisman, who is a U.S. Chess Federation National Master.

Ofek believes his opponents have an advantage over him when he plays chess. But Ofek has overcome that advantage by thinking multiple steps ahead when he plays, said Bill Wardle, the teacher who sponsored the chess tournament.

"Ofek is good at analyzing the situation when he plays chess," said Wardle, who teaches math at Aberdeen High. "He rarely makes a mistake."

Because of his illness, Ofek said he has to have his opponent move his chess pieces.

"It sounds like I may have an advantage, but the truth is, it makes it easier for my opponents to estimate my moves," said Ofek, who was born in Israel but moved to Maryland when he was a young boy. He and his family now live in Abingdon.

Although Ofek doesn't share a lot about what he goes through with his peers, he has used his story to help raise money for the Johns Hopkins Children's Center, has been a guest speaker at public engagements, and has served as a state ambassador for the muscular dystrophy association, he said.

"I try to do whatever I can," Ofek said. "But thinking is really all I can do. I'm really proud of my ability to think."

Ofek has come a long way since his diagnosis, his mother said. Originally, she was told his prognosis was death by age one.

Unwilling to accept a death sentence for her son, his mother began researching the disease. She brought him to Maryland, where he was treated by doctors at Johns Hopkins and the Kennedy Krieger Institute.

"Since then, we have looked at his disease as a birth defect that he has to live with," she said. "Not something he has to die from."

Ofek has adjusted to his illness, but some days it can be depressing, he said.

"I can't go anywhere or do anything," he said. "I have to rely on other people for everything I do."

Richard Kelley, the director of the division of metabolism at Kennedy Krieger, became acquainted with Ofek when he received a call from Ofek's mother, who was living in California at the time, he said.

Kelley helped Ofek through a metabolic crisis, he said. He created a special formula for him that included corn starch, to shorten his overnight fasting period from 10 to 4 hours, he said.

"A healthy person fasts at night and part of their muscle mass is broken down and turned into sugar," he said. "The problem comes with a child who has 20 percent of the muscle mass his peers have. He still has to produce the same amount of glucose."

Although he will never lead the life of a normal teenager, Ofek has a great personality and outlook on life, Kelley said.

"Ofek is very verbal, knowledgeable and articulate," Kelley said. "He charms you."

His 7-year-old sister, Orly, said she has learned to be more compassionate because of her brother.

"Ofek is very fragile," Orly said. "He's different from other people who can walk and other stuff."

Orly gave an account of an incident at school where she joined the children who had to sit at a special table in the cafeteria.

"We have a table that is called the red zone in the cafeteria at school," Orly said. "The kids who sit at the table are allergic to peanuts. I went over and sat with them. I try to be nice to people who are different."

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