Samantha Smith to have her life-saving surgery

Samantha Smith with her children

Samantha Smith will be having stage one of her life-saving treatment at 5pm Tuesday (11 July).

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.

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

Samantha has been advised she may need a back-up fund in case urgent treatment is needed following her surgery. She is able to fund some of the costs following surgery, but still needs to hit the £150,000 goal.

Writing on her Save Samantha appeal page, the brave single mother said: “Today is the day that we've worked so hard for. I woke up with a knot in the pit of my stomach and a longing for life.

“I went to bed last night after having tried to settle the fears of my most precious little humans in the universe; whilst those exact same fears whirled around inside my own head. But I wouldn't have been able to begin to settle any fears at all if it wasn't for the support that the Save Samantha campaign has had so far.

“You incredible people stepped up and helped me fight to afford this treatment, and I'm blessed that it's happened so fast that it still feels surreal.

“Today is going to be the start of a new life for me and my babies.

“On behalf of myself, my children and loved ones, thank you for helping us afford to be under the blessing of Dr Henderson’s skilled hands. I'll see you on the other side, when I'm all fixed up.

“I've had masses of messages of support that I can't wait to read and reply to, but it won't be today, as I need to spend pre-surgery time with my family. I'll be going down to theatre at mid-day US time (5pm UK time).

“Stage one of surgery, here we come. Please continue to support #SaveSamantha for future surgery and treatments.

“All my love and gratitude, Samantha.”

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.

She has 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).

To donate, visit:

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