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Sisters with life-limiting condition taking NHS fight to Parliament

Kate Justicein Bromsgrove
BBC Two women in wheelchairs smile at the camera. There is a path and an area of green grass behind them. The woman on the left has long blond hair and is wearing a pale blue cardigan with a black puffa coat over the top. The woman on the right has shoulder length dark brown hair and is wearing a black top and an open, grey zip-up hoodie.BBC
Olivia Dews (left) and her sister Charlotte Casey have both been diagnosed with Freidriech's Ataxia, a life limiting neurological condition

For Charlotte Casey, one of the things she struggles most with is "not being able to do the most mundane of things with my little girls, like dancing around in the kitchen.

"Or picking them up when they fall over... your natural instinct is to grab your child when they've hurt themselves and we can't do that."

Charlotte, 25, and her sister Olivia Dews, 28, from Worcestershire, were diagnosed with the progressive neurodegenerative disease, Freidriech's Ataxia (FA), in 2024 and now need to use wheelchairs.

The illness damages the spinal cord, peripheral nerves and the cerebellum in the brain, with an average life expectancy for those affected of 35-50 years.

The sisters are lobbying parliament this week, asking for treatment for their condition to be made available on the NHS.

The Department for Health and Social Care said the manufacturer of the drug omaveloxolone had withdrawn from the drug evaluation process, but it could be reconsidered if the firm re-engaged.

Olivia Dews and her sister Charlotte Casey have been diagnosed with Freidriech's Ataxia, a life limiting neurological condition

The women from Bromsgrove, alongside other sufferers, are taking a petition to Downing Street, asking for the National Institute for Health and Care Excellence (NICE) to re-evaluate the treatment under its highly specialised technology committee for extremely rare conditions.

"We need 100,000 signatures for this to even be discussed in parliament," explained Charlotte who, like Olivia, is a mum of two.

"This medication can't cure Freidreich's Ataxia, but it can slow down the progression... and I believe we all should have the chance to take it."

FA is thought to affect 1,100 people in the UK and symptoms include vision impairment, hearing loss, slurred speech, aggressive scoliosis (curvature of the spine), diabetes, and serious heart conditions.

The medication, which has the brand name Skyclarys, has been shown to offer a 54% chance of slowing the progression of the disease, but at almost £300,000 per patient per year, would normally be too expensive to prescribe on the NHS.

Although the drug, which is manufactured by biotech company Biogen, is available in the US and some European health care systems, current NICE guidelines cap treatment spend in England at £30,000 per patient per year.

A woman with long black hair and glasses is standing in a park with grass and swings in the background. She is wearing a black t-shirt with an appeal message printed on the front.
Mum Lucie Dews says her girls are "facing their mortality"

The girls' mother, Lucie Dews, admitted it had been a "really difficult journey for the family.

"None of us knew what it was, none of us knew what it meant. Obviously, me and my husband have got a genetic gene [fault] that we didn't know we carried and of course, when we first found out we felt terrible about that, because obviously we've sort of given it to them."

Dews has two other daughters who do not have the condition but will be carriers of the genetic fault - a mutation in the FXN gene.

She said they were having to take one day at a time, and face the fact that Charlotte and Olivia would never be able to live independently.

"They're facing their mortality really, because we don't know how long our girls have got."

Charlotte said that, even though the diagnosis only came two years ago, they later realised they had had symptoms since they were teenagers.

"We just put it down to clumsiness and just being a little bit off-balance. We didn't realise it would be anything sinister.

"Regular falls when we'd be walking, like just tripping up over nothing... when we'd make a cup of tea we'd make the cup of tea fine, but carrying it from A to B, we'd be shaking it and dropping it everywhere."

A man and a woman smile at the camera. They are in a house, the man on the right is wearing a blue top and has close cropped hair. The woman has shoulder length black hair and a black top.
Kyle Casey is now his wife's main carer and said he struggles to talk about the future

Her husband Kyle is now her main carer.

"You do what you do for the one that you love," he said.

"Getting Charlotte dressed, getting the kids dressed... bathing, getting Charlotte in and out the bath, into her wheelchair."

He admitted trying not to look at the future: "I struggle to talk about this. I struggle to talk about the disability or any of it. This is the most I've talked about it.

"It's just unfair... you don't want to see your loved one deteriorate... obviously in the USA, Skyclarys is given to patients there, I just want the drug here, I want to see my wife for a lot longer, I want the kids to grow up with her."

The women's mother said that for so long there were no treatment options, so "this has given my daughters and everybody else that suffers with Freidriech's Ataxia hope. And we all need that.

"I just think they should be offered the availability of it. We don't know unless we try - and actually what it will give them is time, precious time with their families and that's all we're asking for."

A group of five adults and four children are close together and smiling at the camera outside a brick built house. On the left a man in a blue hoody with close cropped hair stands behind a woman in a black top and white cardigan, with ling dark hair, sitting in a wheelchair. She is holding on to a young girl wearing school uniform. in the centre there is a woman with long dark hair, a balck t-shirt and glasses, with a blond woman in a wheelchair in front of her. On the right, a tall man in a grey t-shirt stands behind three children, an older boy and two smaller girls all with blonde hair.
The family say they want to extend the "precious time" they have together

The petition will be presented to parliament on Thursday, with the hope it will lead to a re-evaluation of the condition and the medication.

A Department of Health and Social Care spokesperson said NICE stood ready to resume the process of evaluating the drug if the company decided to make a new submission.

"In the interim, we are determined to ensure that all those suffering from this debilitating condition get the help and support they need, and NHS England already provides a number of services to help individuals manage their symptoms, including speech and language therapy, occupational therapy, and physical therapy."

Manufacturer Biogen wrote to Ataxia UK last week, reaffirming its commitment to working with NHS bodies to try to secure broader access to the drug. Its UK managing director Kylie Bromley told the charity the company was exploring a possible pilot scheme with the NHS.

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