A mum from Moorside has been in a lengthy battle for information over her daughter’s rare disease for years, but now she is on a mission to raise awareness of the condition in a bid to spare other families the same heartbreaking journey.

Imogen Morris is a typical 15-year-old girl who loves TikTok, dancing and singing.

But in 2015 at the age of just seven years old, she was diagnosed with a degenerative condition.

It took the family two years of MRI scans and genetic testing to reveal that the young girl is suffering from 4H syndrome which is a form of leukodystrophy, a fatal disease that affects the brain and nervous system.

The Oldham Times: Imogen was just seven years old when she was diagnosed with the rare condition.Imogen was just seven years old when she was diagnosed with the rare condition.

There is currently no cure - and the disease progressively gets worse, threatening sufferers' mobility over time.

The disease means every day is different for Imogen with her ability to walk affected from one day to the next.

Specialists in the UK do not know what to recommend to alleviate the disease, and in the absence of information, mum Nicola Morris has made it her mission to fight for a better quality of life for her daughter by searching for answers herself.

She hopes to not only raise awareness of the disease but to take her daughter to a specialist in Amsterdam who might be able to answer some of her questions.

The 40-year-old said she has watched her daughter decline "massively" in the past two years alone with her speech, eating and mobility now adversely affected.

The Oldham Times: Imogen with mum Nicola and siblings, Erin and Gracie.Imogen with mum Nicola and siblings, Erin and Gracie.

She said: "I'm seeing the disease take over now.

“Back in 2015, I was just told this is what’s happening but no one can tell me when, how, how long she is going to live for, is it going to get progressively worse – nothing.

“It can onset at different times and no one’s story is the same, but children die.

“It’s awful not knowing what’s happening, what’s causing it, what preventative measures can be put in place to make her feel better to support her condition.”

The youngster tires easily and requires assistance in almost every aspect of her daily life, from washing her hair to eating.

The disease is affecting the whole family, including siblings Erin, eight, and Gracie, six, who help out with caring duties when they can.

It’s already taken a toll on mum whose mental health has plummeted and is in the process of accessing grief counselling.

Nicola said: “I’m grieving, but it affects my other two children, too.

“It affects us all as a family”.

With Imogen's rapid deterioration, the family are hoping to get a handrail installed in the home to help her down the stairs.

Still, Nicola is concerned about how the disease is taking hold of her "chatty" daughter.

The Oldham Times: Imogen loves making TikTok dances but her mother is worried about what the future holds for the youngster as the disease takes over.Imogen loves making TikTok dances but her mother is worried about what the future holds for the youngster as the disease takes over.

She said: “It’s hard for her as she knows what's happening, but she just wants to be a normal 16-year-old.

“She doesn’t understand she can’t do these things.

“It affects everything – she can’t come out with us a family on walks because she tires so easily.

“She’s stuck inside on her own, she’s got no quality of life and we should be able to get things to help her.

“I have to cut up her food up so it’s small and so she doesn’t choke.

“Everything you have to do for a two-year-old, I’m having to do for my daughter who is nearly 16”.

But the disease hasn’t dampened Imogen’s spirit as Nicola says her daughter “amazes” her every day.

“She’s just so confident and chatty, she doesn’t let anything get in the way”, she added.

However, the mum is dedicated to finding answers and has even set up two Facebook groups in a bid to connect with other sufferers and to document Imogen's journey.

Her group, Let's talk Leukodystrophy, has connected her to families around the world who have faced the same diagnosis with two from the UK coming forward and one from the US.

The Oldham Times: Imogen's mum hopes to take her daughter to Amsterdam to speak to a specialist.Imogen's mum hopes to take her daughter to Amsterdam to speak to a specialist.

But she now hopes to take Imogen to see a specialist in the Netherlands where there is a special consultant and has a fundraising goal of £10,000 to facilitate the travel as well as other things Imogen needs such as a wetroom and a wheelchair.

Nicola has been liaising with the Yaya Foundation, a charity which was set up to find a cure for 4H Leukodystrophy, to take Imogen to Amsterdam for the appointment.

But appointments cost £300 per session, which doesn't include travel and accommodation fees.

Nicola said: "I just want some more insight - some more information and what to expect.

"This is my focus now, I'm doing it.

"I'm raising awareness because I don't want anybody else to have to go through this.

"It's not fair and we shouldn't have to go through this.

"No family should have to go through this", she added.

To help the family on their mission to give Imogen the quality of life she deserves, you can donate to her fundraiser here: https://www.justgiving.com/crowdfunding/imogenspage?utm_term=pYrVmzjme&fbclid=IwAR1hkBraFtdglxvT9YEGTStavmcP0W4sA3Kec7W2Gfr3PxGhTHD6C329WRY