Samantha has been saved
Date published: 17 May 2019
It has been a little over three months since Samantha Smith, 32, underwent a vital life-saving operation in Arizona, a 10-hour operation removing movement in her spine by stabilising her vertebrae with fusion and hardware from inside her throat and the back of the neck.
Seeing Samantha this time round is very different from when Rochdale Online visited her after her initial operations in Washington in 2017. Then, she was very cautious and knew immediately after surgery that the operations hadn’t worked.
Sam was diagnosed with Ehlers Danlos Syndrome (EDS) in December 2016, a genetic condition where connective tissue holding the body together is faulty and too weak. Further related complications followed, which left her at risk of internal decapitation.
The only solution to prevent this was operations abroad, costing hundreds of thousands of pounds as there are no similar options available on the NHS.
These days, Samantha is glowing and it is clear she is not as troubled as she was last time. We paid her a visit on Wednesday (15 May) to find out how life is following her last operation.
“The surgery has been a success as far as I can see,” she smiled, sitting curled up on her sofa with a coffee.
“I just need to pace myself right to get back to doing all the regular things I have missed out on over the last two years. I hurried down the stairs when you got here and I haven’t done that in such a long time!”
It’s fantastic news for Sam, who has spent a large part of the last two years worrying and preparing her children for life without her. After coming round from the operation, her first words were: “it hurts, so I must be alive.”
“I didn’t think I would make it through the surgery,” she admits before telling us how she had made arrangements for her funeral – a daunting task for anyone, let alone a single mother of two primary-school-aged children.
“I remember the moment I saw the worry disappear from Jensen and Brooke’s faces. We were playing in the pool and they suddenly realised I could play around a bit: they had their mum back and that was such a special moment. A huge weight has been lifted because I cannot imagine how they felt.
“I’m not dying anymore.”
Rochdale Online has closely followed Samantha’s journey since April 2017, when we broke the news of her desperate race to raise £150,000 for her initial lifesaving neurosurgery.
The former psychotherapist added: “I am scared of what EDS will do next, but I have to accept and live with it. EDS is so underdiagnosed, which is such a huge issue. I want to create a social enterprise or charity for the care and education of EDS plus holistic aids. I want to help others adapt to living with the condition and educate the healthcare professionals because it is so underdiagnosed.
“I am very fortunate that people fundraised for me twice in a literal life or death situation, and very lucky to have the friends I do, who have helped me on this journey.”
EDS affects around one in 5,000 people worldwide, causing extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses. It can affect different types of connective tissues that provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
The NHS lists four types of EDS, although there are understood to be as many as 13 varieties with symptoms like an increased range of joint movement (joint hypermobility), stretchy skin, fragile skin that breaks or bruises easily.
Having returned home to Smithy Bridge on 31 March, Mother’s Day, Sam has been able to do some of the small things most of us take for granted – gardening, rushing down the stairs, sitting on the grass and walking by Hollingworth Lake, and even attended the 2019 Woman of Rochdale event at the end of April.
“The children had become so independent and I’m wanting to do everything, like make breakfast and I’m building up to taking them to school.
“We do lots of things before and after school because I’ve missed such a large part of their lives in the last two years. Hopefully we can go on holiday together this year.”
Sam does still have some health complications resulting from EDS and her medications, meaning she needs further operations on her pelvis and jaw, which aren’t available on the NHS – but she hopes to have these done privately in the UK.
Samantha will now be working on rehabilitation to build her muscle strength, which she says should help stabilise and reduce her dislocations.
In addition to working towards setting up a charity to help others with EDS and similar complications, the mother of two is currently looking at publishing a book she has written about her experience.
“Any leftover funds raised through the appeal afterwards will be put into the charity. My surgery in Arizona just shows how it should be available and I will be campaigning to make it available in this country. There are immediate results and it will help others survive.
“The recovery period is around two years, and I am losing movement in my neck, which means it is working. I need to remember recovery is yards, not miles, so I don’t overdo it. That said, I am still learning.
“Some days it is hard because I am having to adjust to this new life; I used to be so active. Other days I am very glad to be alive. I’m adjusting and finding a new normal.”
“It’s been nice to get out and see people. I think some are shocked at how I’ve bounced back.”
She smiled: “I’m not dying anymore.”
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