Parents of little Mabel Gregson of Cleveleys who has illness causing childhood dementia thank kind supporters
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Chris and Cheryl Gregson, of Cleveleys, were devastated after being told in June that their daughter, Mabel, had Batten Disease – an incurable illness which affects the nervous system.
Cheryl, a marketing and communications officer, said they were completely terrified of watching her go downhill, as life expectancy is often between just five and ten years old.
Mabel , whose illness started with unexpected seizures, was already losing the ability to walk and struggling with her speech by June,.
Since later that month, Mabel has been having treatment every two weeks at St Mary’s Hospital in Manchester, after a device fitted into her brain so she can receive enzyme infusions every fortnight.
Although not a cure, this breakthrough procedure is expected to slow down the degeneration process and her dad says she has responded well to the treatment, which is expected to take full effect over 9-12 months.
Meanwhile, fundraisers have been trying to ensure that Mabel and her family can make some special memories.
Just two weeks ago family friend Chris Latham, and a number of pals, raised a staggering £10,000 from a sponsored 36 hole golf day across two counties, Lancashire and Yorkshire.
Mabel’s dad said: “We are hugely grateful and humbled by everyone’s support from across the Fylde coast.
"People we know and plenty of people we don’t know have sent messages or helped with fundraising, it has been amazing.
"We are hoping that doctors working with Mabel can find a cure and that it can help towards the bigger picture. That would be Mabel’s legacy.”
There are an estimated 25 – 40 children living with this rare condition in England but it is hoped that as doctors find out more about how it works, they can finally cure it.
Chris Latham,37, of South Shore, whose brother Paul set up a GoFundMe page to help her family make some special memories, organised the golfing day on September 24.
A group of sixteen golfers, including coordinators Chris and pals Jez Walsh and Blackpool Cricket Club chairman Dave Cresswell, got up early to play 18 holes at Halifax Golf Club, before driving to Lytham Green Drive Golf Club for another 18 holes on the same day.
He said: “To say the amount we raised far exceeded our expectations is an understatement.
"We were delighted to help and want to thank everyone who supported us.”
So far the GoFundMe page has raised more than £16,700 of its original target of just £3,000.
To help the fund, visit https://www.gofundme.com/f/help-create-memories-for-little-mabel