EagleTribune.com, North Andover, MA

New Hampshire

April 10, 2013

Fighting back

Fundraiser benefits research of rare skin disease

WINDHAM — Melina Spinazola’s family wants to put a stop to the rare skin blistering disease that has afflicted the 3-year-old girl throughout her life.

They recently organized a fundraiser to combat Epidermolysis Bullosa, or EB.

The benefit at the Castleton Banquet and Conference Center attracted 220 people from the region and raised more than $15,000 for research.

“We were thrilled,” Melina’s mother, Kerri Spinazola, said. “It was a night filled with love and support for my 3-year old.”

Among those attending were Melanie and Troy Medeiros of Methuen. Their daughter, Ava, had the disease and died as an infant in 2004.

“I heard Kerri was doing her fundraiser and wanted to support her as a person and a mom,” Melanie Medeiros said. “There’s not enough awareness of this. There needs to be more.”

EB affects about one of every 50,000 people born in the U.S. each year.

“Melina’s blisters and wounds are caused by the lack of protein found between the layers of the skin,” Kerri Spinazola said.

Conditions vary among patients.

Melina’s family knows her case is milder than many patients, with blistering concentrated in small parts of her body.

“We are so lucky,” her mother said. “We try to keep her life as simple and normal as possible, so she doesn’t think she is defined by the disease.”

Regular bandaging is common for many patients. Melina’s family tries to avoid bandaging, however, because, in her case, bandages can create more blisters.

“We treat things as they occur,” he mother said.

Medeiros recalled her family’s challenges in caring for Ava, who never left the hospital after her birth because of the severity of the disease.

She said there is more hope today for patients such as Melina.

“She’s beautiful, a very sweet girl and very happy,” Medeiros said.

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