Purple rays of hope for Windham 3-year-old
Melina, who suffers from a rare, genetic skin condition called epidermolysis bullosa (EB), is a vision in purple from her purple flowered headband to her purple socks and T-shirt.
A happy, dark-haired toddler who loves watching Disney movies, Melina usually doesn't look much different than other children her age. But underneath her tiny purple slippers, the bottoms of her feet bear the brutal marks of EB, which causes severe blisters, wounds and skin infections that in some patients can become life threatening.
Often called the "butterfly disease" because victims' skin is as fragile as a butterfly's wing, the condition has proven puzzling to the medical profession.
In severe cases, the condition can cause severe organ damage and eventually lead to cancer.
Still, Melina's family hasn't stopped hoping for a cure.
Sales of purple T-shirts and bracelets have been brisk, with the Spinazola family donating all proceeds toward EB research.
Melina's mother, Kerri Spinazola, said her daughter was born with blisters on her hands and bottom, but doctors weren't initially concerned.
"At first we thought nothing of it," Spinazola said.
Six days later, when the blisters worsened, doctors suspected EB. Nearly a year ago, a biopsy confirmed the diagnosis.
About one in 50,000 children are born with the incurable and sometimes fatal condition. Fortunately, Melina has one of the less serious forms of EB, though her condition still requires dutiful care and monitoring by Spinazola and her husband, Ulysses.
"For her, we don't visit the doctor all that often. Doctors can't cure the blisters," Spinazola said. "We only take her in if one of the blisters becomes infected, and we try and make sure that doesn't happen very often."
Each morning, Spinazola must lance and drain her daughter's blisters - an excruciatingly painful, hour-long process that's necessary to prevent life-threatening infections.
"It's horrible, but if we don't do it the blisters keep re-growing," Spinazola said.
While Melina's family tries to make sure life with EB is as normal as possible, sometimes people are unintentionally cruel.
"If she has a blister on her face, which isn't that often, people will stare at her," said Spinazola. "Then they'll pull their kids away even though she's not contagious."
And while the family lives beside Cobbett's Pond, Melina has never been swimming there. She can't. While she loves being the water, a swim in the ocean or a pool or even a dip in the bathtub must be followed by a thorough scrubbing in antibacterial solution. Lake water is just too risky to take any chances, her mother said.
During the recent snowstorm, Melina was one of the first kids out the door to play in the drifts.
"Of course, she suffered for it," Spinazola said. "But it doesn't get her down for too long. She's just got that extra spark, just a sweet little soul."
Melina's two siblings Christian, 9, and Shayla, 6, are among her biggest supporters.
Christian, a third-grader at Golden Brook School, has talked to his classmates about EB and during his last birthday party he asked his friends to donate toward EB research instead of buying him a present.
Shayla finds inspiration in her artwork.
"Whenever she draws a picture, it's of an EB butterfly," Spinazola said.
With a special party planned especially for Melina next month, the family is hoping to continue spreading hope and awareness and raising needed funds for organizations like Pioneering Unique Cures for Kids (PUCK) and the University of Minnesota, which are leading the way in several possible treatment options, including the use of stem cell and bone marrow transplants.
The EB fundraiser in Melina's honor will take place at the Castleton on March 23.
Due to space limitations, the event is by invitation only, though anyone wishing to help with donations for EB research is encouraged to contact Spinazola through her fundraising website, www.cureebbelieve.weebly.com.
The Salem Observer
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Christine Heiser, Executive Editor
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