A teenager who struggles every day with exhaustion is attempting to bike 100 miles during May to help find a treatment or cure for her debilitating condition.
Nearly five years ago, Alia Jones (14) was diagnosed with Mitochondrial Disease that she describes as “making everyday life extremely exhausting and a challenge”.
The condition leaves all parts of a sufferer’s body, including all the main organs, struggling to create energy.
It will only get worse as Alia gets older.
A charity called The Lily Foundation has led the research into a potential cure or treatment and the Jones family has been told a cure might only be a few years away.
Concerned that the current COVID-19 lockdown measures might lead to a lack of funding for that organisation, Alia herself has decided to get on her exercise bike as and when she can throughout May with the ultimate goal to raise as much money as she can for the pioneering research.
Alia, who attends Spalding Academy, describes her charity effort, which she’s called the Tour De Mito 2020, as “a big challenge”.
She said: “As my balance is poor and my leg muscles are weak, this will be incredibly difficult for me, but I am determined to do it.
“I think it is important at times like this to stay positive and support each other the way I have been supported and remember how lucky some of us are compared to others.”
Alia is classed a vulnerable person by the NHS so the whole Jones family including mum and dad Julie and Steve and brother Grayson (9) have been isolating in their home just outside Spalding since March.
She’s trying to do around three miles a day and totting up the miles during the month.
Julie and Steve sought medical help after watching their then eight-year-old daughter get more and more tired.
Steve said: “This is like a healthy person attempting an ultramarathon.
“What Alia has is quite a rare condition and it’s relatively unknown.
“It effects everything Alia does and all her organs.
“She used to be full of beans but then she began to struggle more and more and it was difficult to see.
“She’s trying to bike three miles a day, but it’s so exhausting for her she’ll do what she can.
“On some days the migraines and body aches she receives as part of her condition will just be too much.
“But despite everything it’s unbelievable how positive she is.
“She’s incredibly strong and we’re really, really proud of her.
“If anything, we’re the ones who look up to her.”
Alia’s also raising awareness of Mitochondrial Disease which coincidentaly is currently the subject of a plot on the ITV soap Coronation Street.
She’s already smashed her target and raised £1,700 at the time of going to press.
She said: “I’d like to thank everyone who has supported me so far and hopefully I can raise more.
“Be positive and hopefully I will be able to complete my challenge and get to 100 miles.”
To donate visit the Alia’s 100 mile Tour de Mito 2020 page at www.justgiving.com/fundraising/alia-jones1