A heartbroken mum is trying to raise £2m to help find a cure for her teenage daughter- the only person in the UK with SPG15, a rare motor neuron disease.

Maddi's mother, Carina Thurgood, said she is losing a bit of her 18 year old daughter everyday to the horrific condition called Spastic Paraplegia Type 15 (SPG15) which affects her limb movements, ability to breathe, eyesight and brain functions.

Carina has described Maddi's battle as a "ticking time bomb", having watched her once bubbly and active teenager go from struggling to walk to needing a wheelchair, with her condition progressively worsening each day.

When Maddi was just 14, her parents noticed that she had suddenly developed a limp.

Carina took Maddi to her to their GP and she was then seen by an orthopedic doctor. Staff told Carina that they weren't concerned and that she should bring her back in six months, but Carina wanted a second opinion knowing something was wrong.

The family were then told by a second doctor to take Maddi to Great Ormond Street Hospital in London. Here, a brain scan identified that Maddi had some kind of progressive condition.

Carina, 50, said: "It was pretty much out of the blue. She just started walking with a really mild limp but I didn't think it was anything serious. I just thought maybe it was teenage swagger.

"No way could I ever have dreamed that it was anything serious because she was really well.

"Maddi was one of these kids that never went to the doctors, she was never unwell."

In the hunt for answers, Carina flew to America to speak with doctors, who recommended that Maddi be given a genetic test specific to the condition.

While the test cost around $10,000 in America the family asked Great Ormond Street to carry out the test which cost the family over £2,000.

After Maddi was initially given the wrong diagnosis of another fatal disease, they realised Maddi had Spastic Paraplegia Type 15 (SPG15), at the age of 15.

Her mum continued: "One of the doctors actually said she had never come across anyone with this condition before. It was the first for Great Ormond Street Hospital.

"We were told: 'We're really sorry but there's no treatment for Maddi because it is so rare.'

"This condition causes severe disability and we were told she would not be able to walk. It just progressively gets worse.

"It's heartbreaking to watch your daughter go through that. It's like a living nightmare.

"It really is a ticking time bomb. Every day that goes by, I'm losing a little bit of her."

After reaching out to doctors for help, Carina managed to find a surgeon in America who could tackle the spasticity in her legs, which causes stiffness and can affect normal movement.

Maddi, now 18, had the operation in September 2019 in America. Although it was successful, it didn't cure her condition.

Carina said: "In no way did it cure her condition. We're trying to do everything we can to make her life better. We're just trying to keep her moving.

"We're targeting the problems that come with the condition because once it happens, you can't reverse it. Essentially the cells are dying.

"Maddi's condition is just going to get worse and worse so it's a really sad situation. In a few years, we just don't know what's going to happen.

"The scary part is, what's happened now, we won't get back."

Scientists at Sheffield University have said they are prepared to work on a cure for Maddi, but the family will have to find the money themselves - costing around £2 million.

Carina continued: "She's an amazing girl, she never really complains, she's always smiling no matter what.

"She used to go ice skating but anything like that she can't do anymore. She doesn't have a teenage life anymore, she has been robbed of that.

"Every single day, this overtakes my life. I'm looking after Maddi, taking her to physio, researching every night.

"I need to find a way to help my daughter.

"If a million people donate one pound then that would be huge for us. We're having to fight for this for Maddi's sake and we desperately need help.

"I'm just a mum who is trying to find a cure for her daughter."

You can donate to the cause by visiting the family's Go Fund Me page here: https://www.gofundme.com/f/SavingMaddi You can also support the Maddi Foundation at https://themaddifoundation.com/