Mum once told she had just weeks to live creates charity to help others
HAVING once been given just weeks to live, Samantha Smith is launching a new charity to help prevent others from facing the same fate.
The mum-of-two, from Smithy Bridge, made a miraculous recovery after a life-saving operation to treat the Ehlers Danlos syndrome (EDS) she suffers from.
EDS weakens the body’s connective tissues and was causing Samantha’s spine to be crushed by the weight of her own skull. At one point she
was told she had just four weeks to live but raised £250,000 to help pay for neurosurgery, which is not available on the NHS, in Arizona in February 2019.
Just months later, she is launching her own charity - The EDS Foundation - to helps others with this often mis-diagnosed and misunderstood illness get the help they need.
Samantha, 32, said: “There are 17 different types of EDS. It’s a connective tissue disorder basically the glue that holds your body together. What happens is each molecule is stretched and faulty. In my case it affects everything.
“There are things that can be done to avoid people ending up in my situation where I was fighting for my life.
“In essence it’s providing education on how to offer preventative care for people with EDS instead of reactive care. There currently isn’t any care within the NHS for people with our condition.”
She hopes to provide health care practitioners with greater knowledge to correctly diagnose EDS, help offer preventative treatment to strengthen sufferer’s bodies instead of “waiting until things go wrong” and ultimately provide care which would reduce the number of people that end up disabled.
She is also hoping to create a medical ‘hub’ in Greater Manchester which people with EDS can attend and access care.
She added: “I get contacted at least seven times a day by people who are asking for my help or begging me to help them sadly we lost another one this week. As a charity we would be able to have greater resources to help them.
“I have said from the start that if I was ever to survive this I would never allow my children to go through it as well.
“I wanted to give a shake up to the system. It’s not rare, it’s just rarely diagnosed.”
To launch the charity, Samantha has organised a masquerade ball at Rochdale Town Hall which will involve entertainment, celebrity guests and an auction.
“That will be me saying thank you for all of the hard work that people put in to save me and for how we can now begin to help other people,” she said.
“I wanted to say thank you and give something back as a celebration of our community and how people have supported me.
“It’s more a case of celebrating life, dancing at one of my events for once, having a great time and then using that to boost the charity.”
Having gone from a full-time psychotherapist and mother to Jensen, 10, and Brooke, 9, to “not knowing what day was going to be my last” Samantha now faces trying to reclaim her life back.
Though she will never regain some movement of her upper spine, Samantha has recently been able to walk again, to drive her kids around in an adapted vehicle and has just come back from a family holiday.
She said: “It shouldn’t have happened. I should have been able to get surgery like anybody else.
“If someone has a car crash and had the same injuries they would be on the NHS.
“Because I had EDS and the neuro surgeons were not trained to manage people with it, I was left to die and put on palliative care at 30 years old.
“Half a million pounds later I am a fully active person again but I was lucky I got that surgery I needed.
“It’s been strange to have to remind myself that I am not dying anymore.”
The EDS Foundation launch ball will take place at Rochdale Town Hall on Friday, September 20. Tickets are still available at bit.ly/2lznqkr.