Benefit to ‘Give Charlie a Chance’ in CDKL5 fight

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By Bryan Marshall

For the second year, Williamstown parents hope the community will help “Give Charlie a Chance.”

Amanda and Chris Nicholson will be chairing the benefit fundraiser from 4 to 8 p.m. Aug. 11 at Williamstown Baptist Church to raise money for the International Foundation for CDKL5 Research with the hopes of finding a cure for CDKL5 Disorders.

Their 3-year-old daughter, Charlotte, or Charlie as her family calls her, was diagnosed at 1 1/2 years old with the rare disorder that effects about 250 people worldwide.

The trademark of the CDKL5 disorder is early onset seizures beginning in the first few weeks of life that do not respond well to medication.  

Many of the children impacted will never walk, talk or feed themselves, and they are completely dependent on others for total care.  

Most of them have no functional use of their hands.

Many also suffer from visual impairments, severe gastro-intestinal problems requiring a feeding tube for nutrition and severe scoliosis requiring surgery.

“Despite the fact that she cannot walk, talk or use her hands, she is full of life and personality,” Amanda Nicholson said about her youngest of three daughters. “Her laugh is infectious and her smile brightens up the darkest of days. She has taught her family and friends about courage, bravery, compassion, strength, and love more in her short three years of life, than most people do in a lifetime.”

The family-friendly benefit will include live entertainment, games, face painting, an inflatable slide, dinner, concessions, silent auction items and baskets and a grand prize raffle.

A pulled pork dinner, with an option of hot dog and chips for children, will be served from 5 to 7 p.m.

Cost for dinner is $8 for adults, $5 for kids ages 6 to 12 and $1 for children under 5.

Several children affected by CDKL5, including Charlie, and their families plan to be in attendance.

All money raised will be donated to the International Foundation for CDKL5 Research (IFCR.)

Last year, the event collected $5,300 for the non-profit foundation that was founded in September 2009 by a group of parents of children who are affected by CDKL5.

For more information about the IFCR and CDKL5, go to www.cdkl5.com.