‘I don’t want my child to go through what I have’
AMUM battling a rare condition which means her spine is being crushed by her own skull has revealed the heartbreaking 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 USA after a massive campaign raised £150,000 to pay for life-saving surgery.
But the two operations, which were carried out by one of the world’s leading EDS specialists and aimed to stablise 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, 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 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.
“I have the contacts and support to do it so I am going to give it my best shot.”
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 terrifying symptoms include temporary paralysis and temporary loss of sight and hearing.
Samantha now needs to raise about £50,000 to pay for the second, unexpected, bout of surgery she had in America 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: “We are back to square one in terms of fundraising.
“I need to find a surgeon that has an understanding of my condition and is also a hormone specialist because it appears the root of my problems is hormonal.
“I have been on autopilot for so long now 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.
“I’m not as independent as I would have liked. Emotionally I am at rock bottom. I’m starting all over again and that was not the plan.”
For details on how to donate and for information about upcoming fundraising visit the Save Samantha page on Facebook.