PITTSTON — Violet Pantucci is a very special 6-year-old and everyone that comes in contact with her will tell how special she really is.
Violet was diagnosed with lissencephaly, a rare brain disorder where the surface of the brain is smooth rather than with ridges and folds. As a result of this disorder children born with lissencephaly are prone to seizures and respiratory issues. She has frequent seizures, up to 100 per day, but according to her mother Elizabeth, Violet went 120-days without a single seizure.
There is a circle of family and friends called Team Ultra Violet, or TUV, who have put together a fundraiser that will take place from noon to 6 p.m. Sunday, Aug. 26 at the Hughestown Hose Co. building, 30 Center Street.
It is sponsored by Onesource Fire Rescue.
Violet is in need of many things from everything from a van equipped for a wheelchair to a service dog that senses a seizure before a seizure comes on. She takes a trip to Children’s Hospital in Philadelphia each week.
She has beaten the odds in so many ways, according to her mother.
“We really didn’t expect her to live much past 1 years old,” Elizabeth said.
Most children with lissencephaly have an educational level of a five to seven month baby. Violet surpassed that were she has the mental ability of a normal 6-year-old; so much so that she will start kindergarten at Pittston Area this week.
Violet can be seen wearing her signature bow in her hair recently competed in the 2018 Pittston Tomato Festival Little Miss contest. “She really wanted to be there,” Elizabeth said.
As a result of her entering, she was a co-winner with Mia Bartush.
Violet cannot verbalize, but did answer questions from the judges using a computer where her eyes would look at symbols to communicate.
“The neurology team at Children’s Hospital is amazed with Violet,” Elizabeth said. “She’s one of the only kids with lissencephaly that the doctors know that is potty trained.”
“Using the device (to talk), using her hands and other things is amazing as well,” her father Ron said.
Violet knows her ABC’s and numbers, which is astounding, it’s really not supposed to happen, according to Elizabeth and she’s really looking forward to going to school and making new friends. Her nurse will accompany her to school each day.
Organizers of Team Ultra Violet are hoping for a large turnout to help Violet and her family reach some of their goals.
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