A DEDICATED mum has been inspired to set up her own charity after her daughter had a stroke when she was just 12 years old.
Lauren Pinder, now 16, is one of just eight people in the country to have a rare condition which stops her blood flowing and causes blood clots.
She is rushed to hospital at least once a month, and six years ago she nearly died after her heart stopped.
Just one in 100,000 people around the world are diagnosed with klippel-trenaunay syndrome– meaning most doctors do not know how to treat the condition.
Mum Amanda, 40, of Chapel Street, Billericay, is now setting up a charitable foundation to raise awareness and vital funds for research.
She said: “No one has really heard of klippel-trenaunay, and that needs to change. There is a support group fighting to raise awareness around the world, and I’m responsible for the UK branch.
“I have been trying to get this up and running for the past two years, but in the past fewweeks it has just become huge. There are so many fundraising events in the pipeline and we’re waiting to hear back if we’ve been granted foundation status.
“My daughter has been through so much in the past 16 years. I must have seen 1,000 consultants, because no one seems to knowwhat to do.
“She stopped breathing at ten, and had a stroke when she was 12. Every three or four weeks we have to call an ambulance because of blood clots or her blood stops flowing.
“I can’t even explain how it feels as a parent to have to watch that. It’s just so important we get help.
“It’s really hard, juggling this with work, but I’m a mum first.”
Babies with the syndrome are born with visible birth marks, which are caused by abnormal blood vessels.
As they get older, further symptoms develop, including varicose veins and limb hypertrophy, which means some parts of the body grow too much.
Mrs Pinder, who runs her own hair and beauty business, will host her first awareness event at the family home on Saturday, August 23.
She is also organising a charity football match and summer ball.
For more information, email KTSFUND@mail.com or call 07939 366998.