Brave little “Butterfly Child”

December 27, 2012 Denise Romano
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Twelve-year-old Joseph Parrelli is a normal seventh grader at P.S. 229. He enjoys going fishing, gardening and playing video games with his younger sister, Giavanna in their Dyker Heights home. Parrelli also suffers from Epidermolysis Bullosa (EB), a genetic skin condition that one of 50,000 babies in the U.S. is born with. This means that Parrelli was born without collagen in his skin, causing it to form painful blisters and boils with the slightest touch.

The blisters also form inside of Parrelli’s mouth, eyes, and esophagus. Every day, his mother, Janine, has to change his bandages that protect him from infection.

Youngsters who suffer from EB are commonly referred to as “Butterfly Children,” since they are very delicate. Researchers are still looking for a cure for the devastating disease.

But despite being in nearly constant pain, Parrelli lives an everyday life.

“Despite his disorder, he finds a way to get things done. No matter how hard, we don’t let his condition get in the way of doing what he wants to do,” his mom explained. “EB can be very serious. It took us a while to not make the disorder be [the whole part] of his life. Once we do the bandages, we move on.”

Parrelli is a “serious student” with favorite subjects in history and math. “I like to learn about different types of people that came before us, like the Indians,” Parrelli said. “In math, I like numbers.”

He took home a gold medal in the Bay Ridge Community Council’s Halloween Art Contest for his drawing of a Jack-O-Lantern, black cat and moon. In addition, Parrelli also won some prize money in a lottery, which he split with classmate Antonio Vasta, who assisted him painting his art on the window of Livan Savino on 14th Avenue.

“It’s only fair that I gave him half,” Parrelli said.

His mom added, “He is very considerate of others. He is compassionate; a real gentleman. He is an old soul brought back to us.”

Parrelli thanked his art teacher, Miss Doval, for all of her help. “Art makes me feel relaxed and free. It puts my mind somewhere else so I don’t have to worry about my skin condition,” he said, adding that he is currently working on his own rendition of Van Gogh’s Starry Night. “I like how the colors meld together.”

The Parrelli family said that they often take things one day at a time, since the big picture can be “very frightening.

“It’s easy to be negative and depressed, but it’s hard to get your feet on the ground in the morning,” said Janine. “But please, never feel sorry for us or pity us. As tough as it gets, some good things have happened.”

Some of those things include Parrelli personally meeting the Yankees and Islanders – the Pittsburgh Steelers are next on the list.

Parrelli’s advice for anyone else suffering with EB? “Never give up,” he said. “When life gives you lemons, make lemonade.”

For more information on EB or to make a donation in Parrelli’s name for research to cure EB, visit www.debra.org.

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