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March 24. 2013 11:05PM

Windham 3-year-old is the purple belle of the ball

WINDHAM -- Every little girl dreams of becoming a "purple princess."

During a lavish party held in her honor, 3-year-old Melina Spinazola lived out that dream among family, friends and community members.

The Windham toddler, who suffers from a rare, genetic skin condition called epidermolysis bullosa (EB) danced inside the Castleton Saturday night during the gala fundraiser aimed at raising awareness of her condition as well as funds that will hopefully one day result in a cure.

Ladies wore evening gowns and gentlemen wore suits, with guests encouraged to wear purple, the official color of EB awareness.

Wearing a floor length, grape-colored gown, Melina's mother, Kerri Spinazola, who organized the event with the help of Melina's father, Ulysses, siblings Christian, 9, and Shayla, 6, and dozens of relatives and friends, said she'd "lost count at 223 guests.

"Plans for the benefit had been in the works for the past several months," Spinazola said, with dozens and dozens of area businesses and individuals donating items for a silent auction and raffle.

"We had over 150 donated items," she said. "There were so many items donated, we had to combine some of the prizes, otherwise we would have been pulling tickets all night long."

Also assisting in the event was Delahunty's Nurseries in Windham, which provided colorful table centerpieces, Matt McElroy, who provided DJ services, Joe Spanos Productions, who filmed the event, and Melissa Tarpy, who provided photography services.

Several days before the event, the family had raised nearly $2,000 toward the cause.

Sales of raffle tickets at the front door, as well as purple T-shirts, bracelets and earrings were expected to double or triple that number.

By night's end, more than $15,000 was raised for EB research, according to Spinazola, including more than $2,500 in donations from folks who were unable to attend Saturday's gala.

Often called the "butterfly disease" because victims' skin is as fragile as a butterfly's wings, EB has proven puzzling to the medical profession. In severe cases, the incurable condition can cause severe organ damage and eventually lead to cancer.

But modern research hints at hope for the future, Spinazola said, with organizations like Pioneering Unique Cures for Kids (PUCK) and the University of Minnesota leading the way in several possible treatment options.

Family friend Tanya Filadoro of Windham, who helped organize the event and sold raffle tickets Saturday night, recalled the day she met Melina for the first time. One word came to mind: "adorable."

Haverhill, Mass., residents Heather and Mark Rousseau, friends who also lent helping hands, said they were pleased with the evening's outcome. As the owners of Rousseau Pottery, the couple provided handmade "Cure EB" ornaments to serve as party favors.

"Melina is one lucky little girl," Heather Rousseau said. "She's got an amazingly dedicated family that's been so supportive of her through all of this. I'm just happy to be a part of it."

Those wishing to help with donations for EB research are encouraged to contact Spinazola through her fundraising website, www.cureebbelieve.weebly.com.

aguilmet@newstote.com


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