Motorcycle rally raises funds for little girl with rare brain disease
Published Sunday, June 24, 2018 4:42PM ADT
The family of a little girl living with a rare brain disease is hoping a motorcycle rally will help their daughter get her own wheels, in the form of a wheelchair.
It was quite the sight Saturday afternoon, as a parade of motorcycles made their way through downtown New Glasgow, to help a girl that few, if any of them, had ever met.
“My husband knows a couple of the bikers, and they decided to put this on for her. I didn’t know any of them before this,” says Carla Moore.
Moore’s daughter Payton was just four months old when she was diagnosed with a rare brain disease called Pontocerebellar Hypoplasia.
Her mother says she knew there was something different about her special little girl.
“She wasn’t meeting her milestones. She wasn’t smiling, she didn’t make eye contact, and then one day she stopped eating,” explains Moore. “She lost her ability to eat which landed her in the hospital, and that’s how all the testing started.”
There is no treatment or cure for the disease.
With no mobility, Payton’s family wants to buy her a wheelchair, but the one she requires would cost more than $9000.
“Everything that Payton needs costs money, like her tubing. She can’t be fed by the mouth, she has to be fed by the stomach, and everything costs money, and it would help them greatly, whatever we can get,” says Payton’s grandmother Kay Heighton.
“(The wheelchair) will give her mother a break from having to carry her everywhere. I mean, she’s 25 pounds now and she’s a heavy little girl to be carrying around all the time now,” says grandmother Heather Manthorne.
Payton sees a local therapist on a regular basis, and the family takes to a specialist in Halifax when needed.
The family says they’re grateful for everything people are doing to help, and Moore is particularly grateful for her family.
“My family has been amazing. All of her grandparents have been a great support,” says Moore. “They help take care of her so I can work.”
Baby Payton turns two in July, and the family is hoping to have the new wheelchair at home in time for her birthday.
With files from CTV Atlantic’s Dan MacIntosh.