‘Crushed spine’ mother’s child also has illness
US FAILS TO FULLY WORK
A MUM battling a rare condition which means her spine is being crushed by her skull has revealed the heart-breaking news one of her children has the same illness.
Samantha Smith suffers from Ehlers-Danlos syndrome, which weakens the body’s connective tissues, causing pain, dislocations and cardiac abnormalities.
The mum-of-two, 30, has recently returned from Washington in the US after a campaign raised £150,000 to pay for life-saving surgery for her there.
But the two operations, which were carried out by one of the world’s leading EDS specialists and aimed to stabilise the vertebrae in her neck, didn’t go exactly to plan – and Samantha fears she will almost certainly have to go under the knife again.
And the former psychotherapist, of Smithy Bridge, Rochdale, has also told how one of her two children, Jensen, eight, and Brooke, seven, has the same hereditary condition.
Samantha, who says she suffers about 50 dislocated joints per day, is now campaigning for greater awareness of the condition within following her operation in America the medical profession so her children ‘do not have to go through what I have gone through.’
She said: “Without a doubt one of my children has EDS. They have started rehab already.
“I do not want them to get to my age and have to go through what I have gone through.
“All the treatment I have had and need is private and a lot of the specialists are in Europe or America, but there is no reason why the treatment should not be available here in the UK.
“The only thing that is pushing me to keep going is the knowledge that if I don’t challenge the system nobody else will.”
Samantha has spent a lifetime in pain, but it was only when she was pregnant with Jensen that she started to think something was seriously wrong. But it still took her almost 10 years to get a diagnosis of EDS.
The genetic condition affects just one in 5,000 people in the UK, and its symptoms include temporary paralysis and temporary loss of sight and hearing.
Samantha now needs to raise £50,000 to pay for the second, unexpected, bout of surgery plus up to another £100,000 for tests and potential future surgery to stabilise her neck and get to the bottom of what is causing the problems.
She added: “I need to find a surgeon that has an understanding of my condition and is also a hormone specialist because it appears that’s the root of my problems. “I have had to push to get the answers. I have had to do a lot of things I did not want to do. “I had it my head that I would go to America, have the surgery, come back home and go back to work – but that plan is out of the window now. Emotionally I am at rock bottom. I’m starting all over again.” For details on how to donate, visit the Save Samantha page on Facebook. Samantha Smith