A ‘wonderful’ four-year-old boy with a rare genetic condition hopes to gain more independence with the help of a £12,000 electric wheelchair.
Frankie Penfold’s family have raise £100,000 for charities which have helped their son, but now say ‘charity starts at home’ as they seek donations to fund the life-changing piece of equipment.
Frankie, from Hutton, was diagnosed with mitochondrial disease when he was a one-year-old, leaving him deaf, unable to hold up his head, walk or grasp his toys.
Frankie’s mum, Hannah Harvey, said the shock diagnosis of her ‘wonderfully smiley’ boy had ‘devastated’ her and her partner, Tom Penfold.
She added: “It was like our world came crashing down. When we started having tests, doctors threw names at us, and we were looking at cerebral palsy.
“When he was diagnosed we were gobsmacked.
“Mitochondrial disease is life limiting and we were told he wasn’t going to make it to his second birthday.
“The form he has is called suchla two and we found there are only two other children with this particular form in the UK.”
Hannah said her son often got ‘frustrated’ because he was so cognitively alert but his body could not keep up.
Sean Richardson, who organises the Andy Mac Memorial Golf Cup at Bleadon Hill Golf Club, approached the family hoping to help raise money for a holiday or something else they wanted.
Hannah added: “Frankie is learning so much so quickly so he will have no issue being able to control his new wheelchair.
“You can get some wheelchairs through the NHS though they are very basic and are only suitable for indoors. If we are going to get one, we want something which is fit for our lifestyle, being able to go outside and explore.
“We are hoping to get a Koala electric wheelchair which is just under £12,000 which will last him until he is around 12 years old.
“It needs to be custom made to suit him. Instead of having gears it will instead be like having a switch toy – it will give him the independence any little boy deserves.”
The event, on May 25, will also see a raffle and auction being held at The Old Inn, in Hutton, where a signed Anthony Joshua boxing glove and a week-long stay at a Spanish villa will be up for grabs.
To donate, visit their JustGiving page.
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