Samantha Smith needs further £50,000 to cover costs of urgent second life-saving operation

Samantha Smith with her children

Samantha Smith has to raise a further £50,000 to cover costs for an urgent and unexpected second life-saving operation on Saturday (19 August).

Last week the mother of two from Smithy Bridge, whose brain and spinal cord were being crushed under the weight of her own skull, underwent urgent scans on her brain stem and cranial cervical junction.

https://www.rochdaleonline.co.uk/news-features/2/news-headlines/111737/samantha-smith-requires-urgent-scans-on-brain-stem-and-cranial-cervical-junction

The results confirmed Sam’s fears of further instability requiring unexpected surgery, costing approximately $70,000 (£54,054), and also revealed her spinal cord has thickened since her initial life-saving operation in Washington DC.

During the five-and-a-half-hour procedure to stabilise her neck and back last month, crushed bone was mixed with bone marrow from Sam’s hip and used to fill in the space in her neck and cervical spine. Over the course of six months, new bone will form and build over the sites.

At the same time, Sam also underwent surgery for tethered cord syndrome, releasing her spinal cord from where it had attached to her vertebrae.

Just days later, she suffered a setback in her recovery after she slipped and fell, banging herself at both operation sites.

https://www.rochdaleonline.co.uk/news-features/2/news-headlines/111553/samantha-smith-suffers-setback-after-slipping-just-days-after-lifesaving-neurosurgery

Sam, 30, also requires testing for thrombosis of the blood vessels in her brain. Having hoped to know for certain ahead of Saturday’s surgery, a third operation may be required.

Unlike in the UK, the costs of surgery stateside means a bill of tens of thousands of dollars is racked up. Each time Samantha books an operation, she has to book and pay for all related appointments herself, including, but not limited to, anaesthetists, blood tests, blood screenings, scans, her medical history and physicals, and all medication, effective or otherwise.

As a result, the fundraising deadline has been extended to November.

The mother of two said: “I knew for myself a few weeks ago that my cervical spine was still unstable and unsafe; I was told that it's just a natural part the healing process. I finally had scans which confirmed my fears of more instability and the need to operate ASAP.

“It also showed that I have a very 'odd' looking spinal cord which has thickened a lot since the last operation. My surgeon is unsure whether this is anything of concern as they haven't seen it before. He is seeking further advice with this.”

Being away from home for longer than planned is now taking its toll on Samantha, who continued: “It wasn't so much the devastating news that upset me. It wasn't even the fact that prior to surgery over here I have to find the strength to book my appointments and somehow cover the costs again, or that I now know the agony that I'm going to have to face without pain relief, it was the fact that I’ll be away from home and many people that I love for longer than we planned, and the realisation of the power that Ehlers Danlos Syndrome has over me.”

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. Affecting around one in 5,000 people worldwide, it causes extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses.

Because of EDS, the brave mother of two’s body processes medication too fast to have an effect, resulting in immense pain and a struggle to find effective pain relief methods.

Since December, Samantha also received diagnoses including Craniocervical Instability (CCI), which can arise in EDS sufferers due to a lack of connective tissue support at the craniocervical junction (between the skull and first two vertebrae of the spine), tethered cord syndrome, Atlanto Axial Instability (unstable vertebrae which are easily dislocated).

Sam was also due to have surgery for a dislocated jaw, however she says the specialist wants to treat her with a splint method instead. Her jaw, which she describes as ‘bone on bone’, has deteriorated so much, it’s causing both pain when eating, talking and sleeping and damaging her hearing.

Having gone through so much after a lifetime of pain, Sam is now fighting to accept a new normality.

She explained: “The domino effect that this surgery is having on my body is causing it to destabilise in other areas and maybe my future is more about how long I can last between surgeries, as opposed to my original plan of fixing up these areas and getting back to life as I knew it.

“This really scares me, because I'm not sure I was born with an endless supply of strength. My cortisol levels are rock bottom, which won't help my low mood, most nights I cry with a craving for normality and now I know that my normality isn't the going to be the same as many other people's.

“I need to accept that my new normality means fighting to be heard, then fighting to be treated and then fighting for normality again before it takes me down for the next round.

“EDS is one mighty cruel condition and the UK healthcare system simply must be educated on it; we know that it is passed down to at least one of my children and I refuse to allow them to live this journey.”

She added: “I thought I was nearing the end of my story, but it seems I'm only just getting started. Maybe my journey was never meant to be the one I've had clearly planned out in my mind for years. Maybe now it's about me spending time between surgeries focusing on a healthy lifestyle and waking our healthcare system up to EDS. I don't know.

“Ehlers Danlos Syndrome has changed my imagined life path, but it's given me a gift also; I respect each day that little bit more and I'll take pride and joy in the small, boring, normal moments for they too are a blessing.

“Life as I knew it is very likely over: this is just the beginning.”

To donate, visit:

https://www.youcaring.com/samanthasmith-788861 

PayPal: https://www.paypal.me/savesamantha

Or transfer donations to:
Name: Save Samantha
Acc no: 90266248
Sort code: 20-45-45