Samantha Smith must hit £150,000 target by Monday to pay for life-saving operation

Samantha Smith with her children

Samantha Smith, who is due to have a life-saving operation on Tuesday (11 July), needs to hit her fundraising target by Monday (10 July).

The online fundraiser amount currently stands at £141,459 of the initial £150,000 target- but Sam has been advised she may require a back-up fund ‘just in case’.

She said: “We need to ensure we hit to target in time to pay: I need to pay for most of the surgery by Monday. Some costs can wait until the end of next week and further operations will need to be paid for as they’re done. But we’ve been advised we need a back-up fund in case urgent treatment is needed following next week’s surgery. It’s all very nerve wracking and nothing feels set in stone yet.

“I’m just desperate to have this over with now.”

Sam, whose brain and spinal cord are being crushed under the weight of her own skull, flew out to Washington DC towards the end of June to meet with her surgeon, Dr Henderson, and undergo further medical tests before her provisional surgery date on Tuesday 11 July.

Each test so far has cost between $350 (around £270) and $1,500 (around £1,160). Sam is awaiting results after undertaking blood and genetic tests over concerns of a rare blood clotting condition.

The single mum of two, from Smithy Bridge, 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.

The vascular subtype of EDS is the most serious form where blood vessels or organs can rupture spontaneously from the slightest trauma.

Sam also has to wear a hard neck brace daily as her neck ligaments are too stretched and weakened to support her head in a condition known as Craniocervical Instability (CCI). 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).

The 30-year-old 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.

Having deteriorated rapidly since her initial diagnosis, Sam says her ligaments are now virtually non-existent and also requires a new neck brace with more support. She has also received diagnoses including tethered cord syndrome, Atlanto Axial Instability (unstable vertebrae which are easily dislocated).

The surgery in Washington will be carried out in a different way to as reported previously.

Sam explained: “My surgeon will use a different fusion of hardware and tape that works like ligaments as my neck ligaments are virtually non-existent. He’s changed his surgical plan four times since I’ve been out here.

“Some people have had the surgery and their symptoms have improved, but there is only the guarantee I won’t get worse.”

Crushed bone will be 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.

Sam will also require surgery for the tethered cord to release her spinal cord from her lower vertebrae as it has become so tight, her back is starting to bend with scoliosis. She currently struggles to stay upright for any period of time and suffers from intermittent paralysis.

She has also booked surgery for a dislocated jaw, as her jaw is being damaged by her unstable neck.

The local community are still rallying hard to help Sam reach her target. On 5 August at Littleborough Cricket Club, there will be both a balloon race and a family fun day.

Later this year, Paul Mears and Dan Hirst will be swimming 10 miles across the Atlantic Ocean from Lanzarote to Fuerteventura to raise money for Sam.

Find an event to help Samantha:

http://www.rochdaleonline.co.uk/events/search?searchtype=text&searchvalue=samantha

To help Sam reach her target in time, visit:

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