Windham family fights daughter's rare disease in high style
Melina Spinazola, 4, was a vision in purple at the recent “Believe Gala” held in her honor. The little girl suffers from EB, a rare, genetic skin condition that causes constant blisters and skin infections. (COURTESY)
WINDHAM — Four-year-old Melina Spinazola has been dealt a tough hand in her short life, but that didn’t stop her from dancing the night away with over 200 of her closest friends.
Born with a rare, genetic skin condition called epidermolysis bullosa (EB), the Windham girl was the guest of honor last month during the “Believe Gala” fundraiser at the Castleton Function Hall.
The March 22 event raised more than $15,500 for Pioneering Unique Cures for Kids (PUCK) and the Butterfly Fund, two charities working to research new treatments for the disease.
According to statistics compiled by the Butterfly Fund, EB affects one out of every 50,000 live births. The genetic disease causes significant skin blistering on the body’s inner and outer tissues, making everyday acts such as eating and walking excruciating for EB sufferers.
There is no cure for EB, but families like the Spinazola’s continue holding out hope.
Often called the “butterfly disease” because victims’ skin is as fragile as a butterfly’s wing, EB has proven puzzling to the medical profession. In severe cases, the incurable condition can cause severe organ damage and eventually lead to cancer.Having celebrated her 4th birthday earlier this year, Melina is attending preschool and enjoys going to weekly dance classes, according to her parents.“She suffered from a serious skin infection in February, but is doing much better now,” said Melina’s mom, Kerri Spinazola, on Thursday. “She manages to run, dance and play just like other 4-year-olds. EB definitely doesn’t define her.”
During last month’s fundraiser, guests dressed to the nines in formal attire and were encouraged to wear all things purple, the official color of EB awareness.
“We saw so many happy and generous people,” said Spinazola, who organized the event with Melina’s father, Ulysses, and the couple’s other children, Christian, 10, and Shayla, 7.
Over 230 guests attended the recent gala to give Melina their best.
Various local businesses and organizations assisted the cause, donating nearly 150 items for raffles and silent auctions.
For Methuen, Mass., resident Troy Medeiros, who kept the audience dancing while spinning upbeat tunes, the evening was a bittersweet one.
Medeiros and his wife, Melanie, lost their daughter, Ava, to EB when she was 4 months old.
Ava would have turned 10 this November. Medeiros shared his own family’s struggle during the Believe Gala.
“There wasn’t a dry eye in the house,” Spinazola said.
Maine resident Jocelyn Tripp and her 3-year-daughter, Abby, traveled all the way from their home near Augusta to attend the recent Believe Gala.
Like Melina, Abby was diagnosed with EB shortly after her birth and her family likewise strives to keep day-to-day life as normal as possible.The two little girls were introduced to each other last year, after their mothers met on the EB Lounge Facebook page, a forum for parents of children suffering from the disease.Tripp said “it’s wonderful for Ava to have the chance to meet other kids that are a lot like her.”
“She’s definitely a little star,” Tripp said of her daughter, who attended the gala with her arms and legs wrapped in bandages to protect her delicate skin as she burst onto the dance floor.
In typical fashion, the evening’s guest of honor, Melina, also spent most of the evening on her feet, dancing to her favorite songs from the movie “Frozen” and chatting with her relatives and friends.
“The joy she felt was awesome,” her mother said.
Those wishing to help with donations for EB research are encouraged to contact Spinazola through her fundraising website, www.cureebbelieve.weebly.com.
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