EagleTribune.com, North Andover, MA

April 10, 2013

Fighting back

Fundraiser benefits research of rare skin disease

By John Toole

---- — 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.

Jonathon Connolly, 13, of Haverhill attended the benefit with his mother, Whitney.

A Facebook page describes Jonathon as “an EB warrior.” His family’s experiences with the disease were the subject of a People magazine story a few years ago.

Whitney Connolly said Jonathon has had to deal with EB since he was an infant.

Jonathon spoke about his condition at the Statehouse in Massachusetts last year.

“Whenever we want to do something, my parents need to decide if it is something that I can do or if there is a potential danger to me,” he said in the speech.

The disease is a real challenge for families, Whitney Connolly said.

“Between dealing with bandage changes, the cost and everything, infections,” she said.

Jonathon has been dealing with an infection lately, one his family hopes won’t result in a hospital stay.

His mother agreed the Windham benefit was a big success.

“It was really great to see the community come together with Melina’s family and friends,” she said.

For more about Melina’s case, EB and how to help, visit cureebbelieve.weebly.com.