Howell youth to appear on annual MDA telethon
Nicholas Zichella, 11, lives with Duchenne muscular dystrophy
BY TOYNETT HALL Staff Writer

HOWELL — Nicholas Zichella, 11, can swim in 11 feet of water. He plays video games and hangs out with his friends. Nicholas acts like a typical boy except that unlike his peers, he cannot walk.

Nicholas, who will enter the sixth grade at Howell Middle School South next week, has Duchenne muscular dystrophy, a genetic degenerative disease that progressively affects all voluntary muscles, the heart and breathing muscles. Survival is rare beyond the early 30s, according to information posted on the Muscular Dystrophy Association (MDA) Internet Web site.

Nicholas serves as the New Jersey MDA goodwill ambassador, supporting MDA by participating in a variety of fundraising activities. He and his family are scheduled to appear on the MDA national telethon in a videotaped profile. The Zichellas were profiled on the New York portion of the telethon in 2006 and 2007.

The MDA telethon, also known as the Jerry Lewis Labor Day telethon, will air at 9 p.m. Aug. 31 and run for more than 20 hours through Sept. 1. In this area, the telethon can be seen on WWOR, channel 9. The segment on Nicholas is tentatively scheduled to air between 5 and 6 a.m. Sept. 1.

Evelyne Zichella said her son is doing very well.

"I try to let go as much as I can and allow him to be a kid up until the disease completely takes over," she said, explaining that Nicholas was diagnosed at the age of 4.

"We noticed he had muscular calves and thought he was just a muscular kid," Zichella said. "He was a clumsy child. When other kids his age would play, jumping up and down and things like that, Nicholas couldn't keep up. I told his doctor about it and we were sent to an orthopedic specialist.

"That's when Nick was tested. The tests showed [significant] muscle loss. Nicholas was losing dystrophin [a protein that helps keep muscles intact] in the thousands. We then went to the MDA at the Children's Hospital of Philadelphia, where a muscle biopsy was done. It showed exactly what the problem was," she said.

When asked how the family prepare deals with the situation, she said, "You live and you learn."

Zichella said there is no way to prepare for this type of diagnosis. She said that in the beginning all she could do was ask the doctors questions.

"In the beginning there wasn't much information. The kids who are diagnosed today are much better off. (Years ago) there weren't as many accessible networks as there are Zichella today," she said.

Zichella said the main goal is to keep Nicholas' muscles from atrophying.

"In the winter Nicholas swims at the YMCA in Freehold Township. Also, my husband Tony stretches Nicholas' ankles and legs every night for about a halfhour." she said.

Although Nicholas may be physically challenged, he is not cognitively impaired. He is getting set to be in the sixth grade.

The Zichellas, who have lived in Howell for 10 years, have two other children, Maxine, 16, and Francine, 13.

Zichella said she hopes people will gain an understanding about the disease after they watch the segment about her family.

"I want people to know they should not be afraid of kids who are different. As people understand it, they will be able to make a difference. People should not see the disability, they should see the human being and come together so we can find a cure," Zichella said.