I’m turning into a statue

But I’ll fight back for my kids’ sake By Helen Rowley, 35, from Cambridge

Waking up in bed, both my legs were jolting. Gritting my teeth, pain ripped through my body.

Not again, I thought. I’d been suffering from random leg spasms for years, and my GP couldn’t explain it.

At first, the spasms weren’t that often, so, for years, I’d just got on with life.

At 19, I was an aspiring model, and ran a nightclub. Then, at 23, I became a single mum when I had Olivia, now 12.

By now, the spasms were more frequent, and my legs felt so weak, I worried I’d fall over.

Then, one day, crossing the road, I dropped to the ground, my body frozen. Everything felt stiff and heavy.

Somehow, I dragged myself back up before a car came along.

Soon, I was having up to 10 spasms a day.

‘Surely this isn’t normal,’ I sobbed to my doctor, but still got no diagnosis.

When I met my now-husband Anthony, 43, he quickly took on the role of stepdad. He was supportive and helped me through my daily battle. But my symptoms only got worse.

‘I just want to know what’s wrong,’ I cried to Anthony.

Then, in 2006, after months of tests, I got the answer…

‘You have stiff-person syndrome (SPS),’ a specialist in London told me. A one-ina-million, progressive, neurological condition, it causes muscle stiffness, as well as random muscle spasms, vertigo and speech problems. ‘It’s thought to be caused by the immune system attacking muscles. It will leave you unable to move as the muscles waste away,’ the specialist said. I was turning into a living statue. And there was no known cure. Devastating. Just a few years earlier, I’d been an outgoing model, living life to the fullest. Now my life had been turned upside down.

Anthony was so supportive, but I felt helpless. I spent days in tears as the reality hit home. In 2007, I had my son Harry, now 10, and, in June 2011, Ashleigh, now 6, came along.

The pregnancies considerably worsened my SPS. I had even more spasms, and my muscles felt stiffer.

The slightest loud noise or bright light would trigger a spasm, until I eventually became housebound.

Now I’m in constant agony, and I suffer spasms nearly every 20 minutes.

Some days, I can’t even get out of bed. And I find it hard to talk, sounding slurred.

My only lifeline is a therapy called autologous hematopoietic stem cell transplant, which should stop my immune system from attacking my muscles.

I’m on the NHS waiting list, but it feels like a race against time until I effectively turn to stone.

I’m now trying to raise £65,000 to pay for the treatment myself.

I need daily assistance, and Anthony has given up work to help look after me.

It’s no life for a 35-yearold. I should be enjoying my family. But all I can do is take one day at a time.

And carry on fighting, for my children’s sake.

Just a few years earlier, I’d been living life to the fullest