Talywain mum fighting 'one-in-a-million' condition appeals for op
Updated 1:02pm Tuesday 15th April 2014 in News
Lindsay Clarke from Talywain who suffers from a one in a million condition called Stiff-Person's Syndrome. Pictured with her husband Jason (5208342)
A ONCE-AMBITIOUS-AND-ACTIVE mum-of-three has spoken of the pain of living with a ‘one-in-a-million’ condition which has “robbed her of her dreams and family”, in the hope of raising enough money for a life-saving operation.
Lindsay Clarke, who was once a dancer and on her way to becoming a lawyer, has been completely bed-bound since December, and has, over the last five years, become trapped in her own body.
The 33-year-old has been living with a rare autoimmune disease called Stiff Person Syndrome (SPS) since June 7, 2009 – the day she says her life was “shattered to pieces”.
Mrs Clarke, of Talywain, said: “Overnight I went from being an active, healthy, ambitious post graduate to a 28-year-old old mum of three who could barely lift her head off the pillow. I was overwhelmed with sever fatigue and spasms shooting in both of my legs, making it impossible to stand. From that day my life disintegrated.”
She suffers regular and aggressive seizures and cramps, during which her respiratory system shuts down – they can last hours at a time. She has an oxygen mask and canister constantly by her bed to help her breath during such episodes.
She says the condition has “segregated” her family, forcing her husband, Jason, who is also her full-time carer having given work to look after her, to keep their children, Olivia-Beth, 12, Mollie-Jai 7, and Dylan, 4, downstairs, away from her bedroom, because her body can’t handle the noise.
Mr Clarke, who was his wife’s childhood sweetheart, said: “I can’t sit back and watch her die. She was so headstrong and active. She is a shell of her former self.”
Her only hope, they feel, is to undergo an expensive stem cell transplant, with her body having suffered adverse reactions to a range of medicines.
Mrs Clarke added: “I absolutely, point blank, refuse for SPS to rob me of my life. “I am not ready to die, it’s not my time. I have three beautiful, precious children that I am fighting to stay alive for.
“I hope that I can also raise awareness of how debilitating, dangerous and life threatening this horrendous illness is. This is my attempt, out of sheer desperation, to somehow get my voice heard, before it is too late.”
She has set up a blog, which has drawn support from across the world in only a short time, to document her deterioration, and a fundraising page where people can donate to help her reach her target of £300,000.
£960 has already been raised in just one day.
He blog can be found at http://bit.ly/1hx9ec9
Her fundraising page is http://www.gofundme.com/838nac
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