Stacey Daniel is fighting to ‘get her life back’

Stacey Daniel is fighting to ‘get her life back’ post thumbnail image

The sad irony of it all is not lost on Stacey Daniel: that a woman who played for Leeds United for close to a decade, alongside famous names like Sue Smith and Lucy Ward, is rendered close to immobile most days.

She lost all feeling in her right-hand side nine months ago and it has not yet returned. She does not know if it ever will. Daniel gets out of breath brushing her hair and struggles to write with a pen and paper. Her partner Natalie is now effectively her carer. “And I might not be able to walk, might not be able to see,” Daniel says. “Anything can just go at any time. It’s just a ticking time bomb.”

This is life, at 40, with relapsing-remitting multiple sclerosis (RRMS), a chronic, progressive neurological autoimmune disease affecting the central nervous system. It is not, needless to say, the life that Daniel envisioned for herself when she broke into the Leeds Ladies senior team, won the 2001 Premier League Northern Division, and was named the FA Women’s Premier League young player of the year in 2001-02 .

“She was a young player at a local club who beat us in a regional final one year and destroyed us single-handedly,” Ward remembers. “We signed her the season after. She had pace to burn but was quiet and so laid back. She didn’t realise how good she was.”

“She was a quick, skilful goalscorer,” Smith says, “with good movement in and around the box. She liked to take players on and was always making people smile and laugh. She was committed, determined, and I’ve no doubt these qualities are helping her now.”

MS attacks — episodes of worsening symptoms lasting anything from a few days to months on end — without warning. They can disappear with or without treatment but often persist over several years.

Daniel’s MS attacks are frequent: she will wake upgrateful that I can still walk a little bit, get in the shower, no matter how hard it is” but then may lose feeling in a limb. “If it happens so often, it means the MS is obviously very active,” she says. “It can be a permanent change to your life altogether. Sometimes, you’ll have weakness forever, so I cannot just sit around and wait for attack after attack. I’ve just got to try and take it into my own hands and make a difference to my life.”

Daniel’s current course of treatment — the first course of medication was ineffective and she would experience attacks “all the time” — slows the progression of her MS but cannot cure it. She has lost 80 per cent of feeling in her right arm and hand and, having already spent time in hospital, fears that her left will soon follow without more invasive treatment.

The good news is that Daniel, partly via a GoFundMe page launched in December last year, has managed to raise the £50,000 needed to pay for a month-long course of treatment in Mexico. She will fly out later this month. Ward and Smith were among the former Leeds team-mates who cycled the 127 miles from Anfield to Elland Road, beginning at 5am and continuing until 7:30pm, to raise money in January.

Beginning with a high dose of chemotherapy, the treatment will use Daniel’s own harvested stem cells to replace her defective bone marrow stem cells, virtually resetting her immune system. Hematopoietic stem cell transplantation (HSCT) promises a high success rate but is not yet widely available on the NHS, and is unlikely to be until further clinical trials have taken place.

Time, of course, is the one thing Daniel does not have — to say nothing of the mental toll of existing when she would rather be living, of not working for two years, of living in stasis when she previously attended the gym five times a week on top of playing football and badminton.

“That’s why it was so important for me to try and hit my target sooner rather than later,” she says, “because the more time I’m not on anything, the more open I am to more attacks. It’s the only chance that I have to get some kind of normality back in my life. I’m willing to, you know, go for it, because if I don’t, who have I got to blame?

“Day to day, I don’t really do anything. Everything’s difficult. Although I’m nine and a half stone, if that, my body feels like it weighs double that, easily. Not being able to even walk to the shop or walk the dog massively makes me feel inadequate. It’s always on the brain: why can’t I do that? Why me?

Daniel was playing five-a-side when her finger twinged with what she thought was a trapped nerve. The sensation lingered, then spread across her whole hand, to be joined later by blurred vision. “It just felt like I couldn’t make a 10-yard run,” Daniel recalls. “I just really felt not myself. It was like a heavy feeling, a fatigue, like my body just didn’t want to do this.”

She moved swiftly through referrals. The first cohort of suspected doctors carpal tunnel syndrome, pain in the hands and fingers caused by pressure on a nerve in the wrist, but when Daniel returned negative tests, she had an MRI scan. The scan revealed the telltale white spots — lesions on the brain and spine — from where the immune system had mistakenly attacked the myelin sheath, the layer surrounding the nerves.

She walked to the hospital on her own. “It’s not that far but my leg just didn’t want to move with me,” Daniel says. “It took a ridiculous amount of time. When I got there, he went through the scans and said: ‘I’m sorry, but you’ve got MS’. I didn’t even know what it was at the time. I didn’t believe it was my scan because I was so fit throughout my life. To see that was a massive shock and it took me a while to get my head around it.”

Daniel moved back in with her mother and younger brother. It took “a while” for her to open up — “I don’t like to admit to something” — and only her closest friends knew when she took the leap of making the GoFundMe page. “People didn’t get it and were in disbelief,” Daniel says. “Why has it happened to you? You’re so fit — I don’t get it’. Everyone is always ringing me because they still don’t believe it to this day but it’s true.”

Even after building the site, it was partner Natalie who encouraged Daniel to press the send button — “I still didn’t want to do it” — and share the news with the world.

“In an indeterminate amount of time, (this) could progress to the point where I will need to use a wheelchair and totally lose my independence,” Daniel wrote. “Walking 50 metres, I lose the ability to walk properly and I’m constantly tripping over and losing my balance.

“I have to sit down to put my underwear and socks on, I struggle all the time with the back of my bras, with zips, buttons, washing, doing my hair, climbing the stairs, climbing into and out of the bath, holding Cutlery, a pen, a glass and brushing my teeth. I experience severe fatigue. The list is endless.”

“To even know there’s a slim chance fills me with massive hope and joy, because that’s all I want,” Daniel says. “I want to get my life back as much as possible. It makes me happy knowing that maybe, it will be OK… that, maybe, I’ll be able to do that.”

(Photo: Leeds United)

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