Aston grandparents fundraise for Frankie after life-limiting disease diagnosis
- Credit: Archant
Grandparents living in a village near Stevenage have been raising money to help find a cure for their grandson’s life-limiting disease.
Brenda and Paul Sheridan - who live in Aston - have been fundraising to help raise £100,000 for little Frankie's charity, the H-abc Foundation UK, to fund research.
The four-year-old was diagnosed during the school summer holidays this year with H-abc Leukodystrophy, which is a progressive neurological disease - and there are only 150 known cases in children across the world.
"We've always known that there was something wrong as Frankie didn't reach milestones that other kids usually do," Brenda told the Comet.
"They first diagnosed him with hyper mobility when he was around one year old."
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"But at the beginning of the year, they thought it was cerebral palsy, which sort of made it easier as it was good to have a firm diagnosis."
However, after various tests and an MRI scan it revealed that Frankie had this rare disease.
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Once the family overcame the shock, Frankie's mother Amy started to research into the disease. She discovered a children's hospital based in Philadelphia in the United States who are researching with the aim to find a cure. She helped set up a UK-based charity, H-abc Foundation UK, to support the American hospital's research.
Within the first few weeks, the charity raised £18,000 and their aim is to now raise £100,000.
The family have been busy fundraising for Frankie, including Brenda and Paul who took part in a bring and buy sale in Aston.
"It was one of my neighbours who said to me that she had this bring and buy which she raises money for a hospice," explained the grandmother-of-six.
"She kindly offered that half of the money raised could go to Frankie."
The event allowed people to bring their own things to sell without any set prices, with customers paying what they wish. The event raised around £350 for the foundation.
As well as this, Amy and her sister Sophie have hosted their own 80s night in Ware which raised £1,000.
But the support for Frankie doesn't stop there. He is surrounded by a loving family who he will be spending his Christmas with this year, too.
Brenda added: "It will be nice to have all the grandkids together as they don't treat Frankie any differently. They play with him and crawl along the floor with him.
"Frankie is just Frankie - we're sure that it won't be any different to any other Christmas for him!"
You can find their fundraising page at www.justgiving.com/fundraising/h-abc