02/06/2014 12:40 BST | Updated 20/05/2015 10:12 BST

Stiff Person Syndrome: Mum Is Turning Into A Living Statue



A mum who started turning into a living statue two months after giving birth is desperately trying to raise funds so she can see her children grow up.

Lindsey Clarke's nightmare began when she woke to feed her baby but couldn't lift her head off the pillow.

Thinking she was suffering from anaemia-related fatigue she went to her GP, but after extensive tests she was diagnosed with a condition called Stiff Person Syndrome - a one-in-a-million condition that causes violent spasm and excruciating pain, leaving her gasping for breath as her body stiffens into a living statue.

Lindsey, 33, told Wales Online: "The spasms started in my legs. Then over time it moved to my abdomen. Then it started affecting my arms and hands and then my respiratory system.

"Now I can't swallow during a spasm and end up vomiting blood because of the contractions being so hard."

Mum-of-three Lindsey, from Talywain, who is married to Jason, 35, suffers regular and aggressive seizures and cramps that can last hours at a time.

After her diagnosis in June 2009, Jason has been forced to give up work to become her full-time carer as well as looking after the couple's three children Olivia-Beth, 13, Mollie-Jai, six, and Dylan-John, five.

He regularly monitors her oxygen levels and has to pump her chest to help her breathe during a seizure.

Lindsey said: "When I am choking during spasm, vomiting and coughing up blood because my lungs are contracting so hard I can see the look of fear on Jason's face.

"My whole body goes into spasm. From the tips of my toes to the top of my head, everything is crushed.

"The skin on my face changes and I can't see because my eyes go into spasm. If you pushed and pushed hard enough during a spasm you would snap me."

Bed-bound Lindsey has not seen the downstairs of her home since December 22 last year – the day she came home from hospital after a prolonged fit.

She said: "The biggest goal of my day is to make it to my bathroom, to crawl or to wall walk but to make it back in one piece.

"Everything affects me. Sound, movement, noise, vibrations or a change in temperature. A sudden noise that I am not expecting like the pop of a balloon will trigger a seizure."

Lindsey was training to be a lawyer when she was diagnosed but her dream now is simply to see her children grow up.

However, her only hope for treatment is to pay for a Stem Cell Transplant but the procedure has never been offered in the UK for anyone suffering from Stiff Person Syndrome.

It is offered in Denver, Colorado but costs £300,000. Now she is desperately trying to raise enough money for a life-saving operation in the USA.

Lindsey said: "If every person who reads this story donated just £1 I would have enough for my operation," she said.

To donate visit Lindsey's GoFundMe page.