A HOYLAND schoolgirl whose life was turned upside down before Christmas after being diagnosed with a debilitating illness which affects less than one in a million people has been given a ‘glimmer of hope’ through a special trial in America - but she needs the town’s support to help her get there.
Daisy Ashton, 14, was diagnosed with CMT4J (CharcotMarieTooth Type 4J) in December having been poorly for a prolonged period of time.
The illness is an ultra-rare, aggressive neurological disease which affects less than one in a million people.
It damages the nerves, causing progressive muscle weakness and will eventually leave Daisy unable to walk.
The condition can also weaken the respiratory muscles, leading to breathing difficulties.
Her mum, Adele Fisher, told the Chronicle: “Daisy has always been quite a poorly girl.
“Around 15 months ago she lost a load of weight and began fainting.
“She just wasn’t right.
“I tried to get her referred and I had to fight to get her seen.
“On December 3 she was diagnosed with this ultra-rare disease.
“CMT isn’t that rare but her variant really is.
“It’s less than one in a million people who have it.
“There’s no cure and there’s no treatment for it here in the UK on the NHS.
“I was told that she’d lose the ability to walk.
“Her life has been flipped upside down.
“It can affect her respiratory system.
“It’s just a case of keeping her pain under control.”
Adele has left her job to provide 24/7 care for her daughter - and she admits it’s been an incredibly tough time.
But the family has been offered a glimmer of hope through a genetic treatment trial and Natural History study currently taking place in the United States, which may help to stop or slow the progression of Daisy’s disease.
She added: “I found out about the organisation in America and they’ve received some funding for a trial.
“I decided we should apply and it would give us some hope.
“She’s been officially awarded the funding for her gene therapy treatment and her travel costs to America.
“This will cover things like medical costs and flight costs.
“When she was diagnosed we were told there’s nothing they could do but to find this shows there is some light at the end of the tunnel.
“I’m being optimistic because that’s what you’ve got to do.”
Adele said you’ll never hear Daisy moan despite what she’s going through.
“It’s awful,” she said.
“No 14-year-old should ever have to go through something like this.
“But she’s got such a high pain threshold and you’ll never hear her moan.
“She just gets on with it.
“It’s rubbish for her.
“She’s got a step-sister whose able to do the things that teenagers do but she’s unable to do any of that.
“It’s really hard for her.”
The family are raising money to try and get Daisy to America.
More than £1,800 has been raised so far.
Adele added: “While the ‘big’ costs are covered, the journey to get Daisy there - and keep our family stable during this time - is still a mountain to climb.
“We are shifting our focus to cover the remaining essential costs that the medical funding doesn’t include.
“This is the miracle we’ve been praying for.
“At the moment Daisy is being considered for the National History Study in Iowa.
“Hopefully when the clinical trial is up and running, Daisy will considered for this too.
“We are keeping everything crossed and trying to get everything into place so we’re ready.”
https://www.gofundme.com/f/help-daisy-to-get-life-saving-gene-therapy-treatment
