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Lehighton man needs help to get new van

Derek Szena loves life; he wants to live it like everyone else.

The Lehighton man, 29, was born with Duchenne muscular dystrophy, a genetic disorder characterized by progressive muscle degeneration.

Szena, who lives with his parents, needs assistance when he leaves the house. He uses a 22-year-old van that recently broke down when a tire broke off. An ambulance took Szena and his wheelchair home.

“I need to get to my doctors’ appointments,” Szena said, “and I’d like to be able to get out of my house to do the things I like to do.”

Szena and his family are asking for contributions through the medical fundraising organization Help Hope Live. The organization, based in Radnor, helps raise money to cover medical costs that insurance won’t. The Szenas hope to raise $40,000 for a new van.

“Some of his appointments are in the Lehigh Valley,” said Marla, Derek’s mother, “and twice a year we have to take him to a specialist in Baltimore and we’re worried the van we use might not make it there and back.”

If the family gets enough money to buy a new van it won’t have exactly what Szena needs.

“To convert the van to accommodate Derek will cost about another $40,000,” Marla said. “The state has an Independence Waiver to cover that much of the cost, but once we apply and purchase the van, we have 30 days to take ownership before the waiver expires. If we were to cancel the waiver for whatever reason, it can never be renewed.”

Szena has a visiting nurse, Marisa Petko, and requires 24-hour care.

“Derek is on full life support with a ventilator,” Marla said. “He has to be repositioned, helped with his hygiene, and getting him dressed. He has to be fed and basically everything else healthy people take for granted, someone has to do for him.”

Szena, who receives Social Security disability income, remains mostly housebound while he looks forward to do the things he loves.

“I like going to Phillies’ games, soccer games, concerts,” he said. “I like watching the Pittsburgh Steelers, too.”

To give him some relief from cabin fever, he likes to sit outside by Beltzville Lake near where he lives. “I like to watch the water.”

His physical disability restricts his movement, but his mind is active.

A 2011 graduate of Palmerton High School, he earned a bachelor’s degree from DeSales University in digital art. He started his own business to help companies and businesses by designing marketing ads.

“I like to listen to country music, especially Luke Combs,” he said. His favorite food is French fries and his favorite movie is “Lord of the Rings.”

“Most of all, I like hanging out with my friends and my family,” he said.

With their daughter Faith in college and two car payments, the family said it can’t manage another payment.

“This is all certainly stressful,” said Marla, who doesn’t know how the family would pay for repairs if the present van needs work.

Despite his limitations, Szena keeps a positive attitude.

“God never gives you more than you can handle,” he said, “I was supposed to get muscular dystrophy because he knew I was going to be able to handle it.”

Donations can be made at helphopelive.org (search for Derek Szena) or checks sent in honor of Derek Szena to Help Hope Live, 2 Radnor Corporate Center, Suite 100, 100 Matsonford Road, Radnor, PA, 19087.

Derek Szena has Duchenne muscular dystrophy and needs assistance leaving the house. CONTRIBUTED PHOTO