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Pictou County child with rare brain disease in need of wheelchair

Payton Moore has a rare disease known as pontocerebellar hypoplasia.
Payton Moore has a rare disease known as pontocerebellar hypoplasia. - Contributed

Managing symptoms for two-year-old involves therapy, travel to see specialist; fundraiser Saturday

Carla Moore knew something wasn’t right when her daughter Payton was about four months old.

“She wasn’t meeting her milestones or smiling or making eye contact,” Moore said. “She lost her ability to eat on her own.”

It was around that time she was diagnosed with a very rare brain disease called pontocerebellar hypoplasia.

“She’s the only child with it in Atlantic Canada,” Moore said of the disease, which is caused by mutations in the genes. “There’s no treatment. All they can do is manage her symptoms.”

The disease affects the brain and prevents those affected by it from developing properly. There is currently no cure.

Payton will be turning two in July. She can’t eat on her own and has mobility issues, which make it hard to get her around.

The family takes it one day at a time and is working with a therapist locally. They travel to see a specialist in Halifax regularly.

On Saturday, the Katt Sass MC will be holding a fundraising event featuring a motorcycle ride and barbecue to help Payton’s family purchase a wheelchair for her.

Moore said that will be a huge help to them.

“She’s getting quite heavy to be carrying around everywhere,” she said.

A stroller doesn’t support her properly which is why a wheelchair is necessary. The wheelchair she needs costs approximately $9,200 so whatever people are able to give to help will be a huge help, Moore said.

“It’s amazing to see what people are doing for her.”

Those who want to take part in Saturday’s ride are asked to meet at 181 MacLean St. in New Glasgow at 2 p.m. with the ride starting at 2:30 p.m. The ride itself will last about 45 minutes to an hour and will be followed by a barbecue at the clubhouse. The club is asking for participants to make a minimum donation of $10.

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