North Strabane sisters must travel to treat rare genetic disease

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When Abigail and Haylee LaBarbera head to school each day in Canon-McMillan School District, they wear bandages, and after they arrive at school, they are under continual supervision from a school nurse to protect them from injury.

The sisters, ages 15 and 11, were born with a rare genetic disease that causes their skin to be so fragile that even minor rubbing can cause severe blistering and tearing.

The slightest bump also can cause painful blisters, said their father, Mark LaBarbera of North Strabane. The blisters, however, are not limited to the outer skin. They also can develop inside the body, including the linings of the mouth, esophagus and stomach.

Abigail and Haylee were born with recessive dystrophic epidermolysis bullosa, which affects about one out of every 20,000 births, according to the website for the Dystrophic Epidermolysis Bullosa Research Association of America, or Debra.

Children with the disease are sometimes called butterfly children because their skin is as fragile as a butterfly's wings.

Mark and Jennifer LaBarbera are carriers of the gene that causes the disease, which means they have a one in four chance of having a child with the condition. They also have a 19-year-old son who does not have the disease.

Haylee is a student at Canon-McMillan High School, and Abigail attends North Strabane Intermediate School.

"Mentally, they're just like any other child their age," Mr. LaBarbera said. "But, they can't do the same things."

Since the birth of their daughters, the LaBarberas have had thousands of dollars in out-of-pocket expenses for the extended medical treatment the girls require, including repeated visits to Children's Hospital in Cincinnati, which focuses on the disease.

Mr. LaBarbera, a Penn Hills native, is a subcontractor who specializes in installing hardwood floors. To make ends meet, he also works a second job as a bouncer at a local bar. Mrs. LaBarbera works for Family Resources in Pittsburgh.

Consulate Health Care of North Strabane, a skilled nursing and rehabilitation facility, is raising money to help the LaBarberas with the costs.

Richard Valentic, administrator at Consulate, learned about Haylee and Abigail when he contacted the Canon-McMillan School District to find a cause his facility could support.

"The LaBarbera girls touched me immediately, and I knew from the moment I learned of their challenging story, we could indeed help make a difference," he said.

To raise money for the family, Consulate is holding a Taste of the Town event from 3 to 6 p.m. Sept. 26 at its facility at 100 Tandem Village Road. For a $10 donation, participants can taste foods provided by an array of local vendors and hear live entertainment.

"Our mission at Consulate of North Strabane is to make a difference in the lives we touch," Mr. Valentic said. " ... we were looking to do just that for a student or students in the local community we served."

Mr. LaBarbera said he and his family are grateful.

"There are no words to describe" how appreciative we are, he said. "It's such a wonderful thing."

For more information about the event, contact Helen Beal of Consulate at 724-743-9000.

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Linda Metz, freelance writer:


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