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Samantha Smith to meet surgeon next week

Date published: 15 June 2017

Samantha Smith is due to meet with a surgeon in Washington on Thursday 22 June as she is just £8,000 from reaching her target of raising £150,000 to cover the cost of her vital life-saving surgery.

She said: “I’m hoping he can do the first surgery when I’m out there. I’m hoping the rough estimate of £150,000 doesn’t change or we may have to raise more in a very short space of time.

“I can’t put a price on the other surgeries as the surgeon can’t tell me until he sees me.

“This first one is the most important and it now feels attainable.”

The 30-year old from Smithy Bridge desperately needed to raise £150,000 for life-saving neurosurgery. The surgery is so complex that she will have to travel abroad, but it has a success rate of 95%. She has a back-up plan of having the surgery in Barcelona on 6 July.

The surgery involves fusing her skull and cervical spine - the uppermost section of the spine - into place using her lower back ribs. The fusion will cover her cervical and first thoracic vertebrae, resulting in complete loss of mobility in Sam’s head and upper spine.

She will be induced into a medical coma for several days and may require a halo brace to be drilled into her skull to stabilise her head.

If all goes well, a few days later, a second operation will be conducted. Sam’s surgeon will remove damaged discs from her spine via the front of her neck and replace with metal caging to strengthen the area.

Other tests suggest the single mum has instability further into her lumbar region - lower spine - which will require further surgery and will remove all of Sam’s spinal movement in addition to the loss of her head and neck movement. She currently struggles to stay upright for any period of time and suffers from intermittent paralysis.

The 30-year-old’s brain and spinal cord are being crushed under the weight of her own skull. She wears a hard neck brace daily as the ligaments in Samantha’s neck are too stretched and weakened to support her head in a condition known as Crainocervical Instability (CCI).

Sam is also at high risk of internal decapitation every day due to the weakness of her ligaments and the formation of scar tissue which is pressing on her brain stem.

Samantha was diagnosed with Ehlers Danlos Syndrome (EDS) in December 2016, after ‘a lifetime of pain and eight years of tests, misdiagnoses and ill health’. 

EDS is a genetic condition that means connective tissue holding the body together is faulty and too weak, causing extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses. It affects around one in 5,000 people worldwide.

CCI 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).

Following a consultation in Barcelona, the brave single mother of two has rapidly deteriorated and has since been diagnosed with further complications, including unstable vertebrae which are easily dislocated (Atlanto Axial Instability).

There are also signs the Sam is suffering from Tethered Cord Syndrome, a neurological disorder relating to a malfunction of the spinal cord.

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Serenity by Kim Gregory.