Kentish Gazette Canterbury & District
Fundraiser to help boy learn to walk
lstafford@thekmgroup.co.uk
It’s also to help him get around. The fundraising drive is in the absence of any support from the NHS, social services or charities, which will not provide equipment to a child with an undiagnosed condition.
The couple find themselves in a daily battle to obtain support, and spend a lot of time launching appeals against the rejections they receive.
Kara said: “The biggest problem is getting help. Children with no diagnosis don’t get the same support as those with recognised conditions.
“They are ignored by the NHS and charities, except for organisations like Syndromes Without A Name (SWAN UK).
“We’ve applied for things like housing, home respite and modified equipment for Grayson, but we’ve been turned down because they don’t know how to relate to his condition.
“They can’t categorise it on paper. If he had cerebral palsy, we would get it all tomorrow. It’s incredibly frustrating.”
Grayson continues to baffle doctors, who are unable to pinpoint the reasons for his development problems, despite countless tests, genetic studies, operations and hospital trips.
All they know is he has brain damage, and lumps on his brain called calcifications.
While Grayson may look like an average four-year-old boy with a mischievous smile, he has the mental capacity of a nine-month-old baby.
He communicates only by making noises and darting his eyes at objects, and is not expected to ever be able to walk.
They hope the fun day will not only raise money for equipment, SWAN UK and the Multiple Sclerosis Society, but also awareness that children like Grayson exist.
The free event will be held at Conrad Hall in Bishopsbourne from 11am to 4pm, and will feature face-painting, stalls, games, a tombola and raffle with prizes donated by Kent firms, and even a man auction.
More than 100 people attended last year’s fun day, which raised £3,500 for the trike and SWAN UK.
For more information about this year’s event or to donate money or prizes, visit graysonsgfd.blogspot.co.uk.