Article Tools

Font size
+
Share This
EmailFacebookTwitter

Photo: N/A, License: N/A

Photo: N/A, License: N/A

Violet Pantucci, of Pittston, was born with a rare genetic brain malformation called Lissencephaly. Despite a diagnosis that said she would have the functionality of an infant, the 4-year-old pre-schooler communicates with a communication devise and is learning to walk. A fundraiser is being held Saturday, Aug. 12, held to help with her medical expenses.

A couple weeks ago, Julio Caprari was chatting with Pittston firefighter Joe Kelly when Kelly mentioned Violet Pantucci, a 4-year-old from Pittston who has a very rare medical condition. Caprari didn’t know Violet or her family, but he was so moved by her story, he had to help. Caprari is a Fourth Degree Knight, board member and past president of the JFK Knights of Columbus in Pittston. He took Violet’s story to his brothers at the Knights and within hours they had plans for a fundraiser up and running.

The fundraiser is at the Knights of Columbus from 4 to 8 p.m. Saturday, Aug. 12. The Knights will be asking for donations at the door. There will be baskets, raffles and door prizes, plus the kitchen will be open and there will be a cash bar.

“We are asking businesses and individuals to donate baskets or gift certificates for door prizes for the event,” Caprari said. “They can bring donations to our social quarters, 55 S. Main St., Pittston, from 11 a.m. to 11 p.m. Monday through Saturday.” Or, call Julio at 570- 592-3966.

Violet seemed healthy when she was born Aug. 14, 2012. At six months, she was diagnosed with lissencephaly, which literally means “smooth brain.” It’s a rare, gene-linked brain malformation. Fewer than 1 in 100,000 babies have it.

In an email, her parents Ron and Elizabeth wrote: “We were told the optimal level of functioning to expect was that of a 3 to 5 month old. In fact, the prognosis given by world’s leading expert on her condition was that Violet would never have any purposeful movement or communicate in any way. Today, this endearing, brilliant and beautiful 4-year-old girl is doing miraculous things. She excels socially and academically in preschool. She uses a power chair and is beginning to walk using a gait trainer. Violet’s favorite things include: therapeutic horse back riding, listening to and dancing to music and swimming. She communicates not only through her endless array of expressions, but verbally with her communication device.

“Nonetheless, Violet often needs emergency responders to come to her aid, frequent hospitalizations and countless visits to specialists out of the area. She requires round the clock care, due to her relentless seizures,” the email stated.

Her advocates are called “Team Ultra Violet.” The fundraiser is being held to ease the burden of the astronomical costs of medications, adaptive equipment, and therapies that are not covered by insurance and her parents’ lost wages.

From the email: “Whether you are an individual or a business owner, we welcome donations of baskets, food, gift certificates, etc. As a contributor, you are now a welcomed part of a growing group of people who believe in the beautiful and strong spirit of our sweet Violet. Welcome to Team Ultra Violet. To learn more about this amazing little girl, look up Violet Pantucci on Facebook.” There also is a GoFundMe page for Violet.

Caprari said the fundraiser will include a live band. He’s not sure which band it will be, but live music is appropriate for a party for a little girl who loves music and dancing.

jsmiles@pittstonprogress.com