Samantha Smith in desperate rush to raise £150,000 for life saving surgery

Samantha Smith with her children

Samantha Smith, from Smithy Bridge, has just four months to raise £150,000 for life-saving surgery in America.

The 30-year-old’s brain and spinal cord are being crushed under the weight of her own skull, and she desperately needs to raise funds for an operation with a US surgeon that has a 95 percent success rate.

Samantha, who has two children, Jensen, eight, and Brooke, seven, 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.

Despite these issues, the single mother-of-two remained largely independent until January 2017, and ran her own business as a psychotherapist.

After Samantha started to experience a range of symptoms from losing consciousness on a regular basis, vomiting blood and extreme head pain, she was diagnosed with Crainocervical Instability (CCI) just last month.

The Pain Relief Foundation say around one in fifteen people with EDS will develop CCI due to a lack of connective tissue support at the craniocervical junction (between the skull and first two vertebrae of the spine). It can manifest through repetitive stretch injuries such as turning your head.

CCI means that the ligaments in Samantha’s neck are too stretched and weakened to support her head, causing the top of her spine to squash her brain stem under the weight of her skull.

If she does not receive this vital surgery, the condition will kill her after causing organ failure and paralysis. There are no surgeons qualified in the UK to conduct the complex surgery that can keep her alive.

Samantha won’t know exactly what surgical method will be used until she meets with surgeons, but hopes it will include fusing her occipital bone of her skull to her upper cervical vertebrae, stabilising her vertebrae and replacing the prolapsed discs, ensuring her spinal cord is no longer being compressed. She believes the fusion could be a combination of titanium and bone material.

Samantha said: “The specialists can’t tell me how long this will take, only that time is of the essence and the longer we wait, the more damage will be done. My spine is compressing my spinal cord. My cervical discs are damaged and prolapsing. I feel the relentless agony of it every minute of the day in addition to the nerve damage.

“Unfortunately, the EDS makes me resistant to local anaesthetics and many analgesics so pain relief is ineffective and a positive attitude and sheer determination to enjoy life is my only option. I’m not perfect; lately the determination has been replaced by desperation and my positive attitude is somewhat faltering at the reality of my challenge ahead.

“CCI is slowly stripping me of my independence and normal functioning. I must dig deeper than I ever thought possible to manage day-to-day tasks; it’s incredible how my children’s laughter can relieve the pain for a fleeting moment.”

Samantha is in constant neurological pain from the condition, and says her body can go into shock if she stands for more than a few minutes. She also has tachycardia (medically defined as ‘an abnormally fast resting heart rate of at least 100 beats per minute), tremors, and disturbances to her vision and hearing.

She added: “The condition itself is a cruel blow, but learning that there are no surgeons qualified to operate on an EDS patient in the UK was even harder.

“I have truly exhausted every avenue; myself and my family have spent the last eight years fighting and funding private care to get the answers I needed. Now, I find myself in the powerless situation where I can no longer work, run a business or pay for the lifesaving surgery I so desperately need.

“My beautiful babies deserve their healthy, happy momma back and I have way too much to live for to let this condition win.”

To donate towards Samantha’s life-saving surgery, visit:

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