I’m Samantha, I’m a 30 year old single mother of two fantastic children. I owned a business and worked as a Psychotherapist until recently when my life was turned upside down and I learnt that my brain and spinal cord are being crushed under the weight of my skull.
The UK has no one qualified to do the complex surgery that will keep me alive. I must now fundraise for my own life… and for my babies to have the mummy they so desperately need and deserve.
In December last year, after a lifetime of pain and 8 years of tests, misdiagnosis’s and ill health, I was finally diagnosed with Ehlers Danlos Syndrome (EDS). EDS is a genetic condition that means the ‘glue’ that holds the body together is faulty and too weak, causing extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses. Despite these issues and constant pain I’ve remained largely independent until January 2017.
I started to lose consciousness regularly, vomit blood, experience extreme head pain, multi organ involvement, chest pain and weakness in my limbs. In March, 2017, I was told that Crainocervical Instability (CCI) caused by the EDS was to blame for these problems.
CCI means that the ligaments in the neck are too stretched and weakened to support my head. This is causing the top of my spine to squash my brain stem under the weight of my skull. 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 I’m not perfect; lately the determination has been replaced by desperation and my positive attitude is somewhat faltering at the reality of my challenge ahead.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.
The harsh reality is that if I don’t raise the funds for this surgery abroad then it will cause organ failure, paralysis and then it will take my life. 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.
I am in constant pain in my neck, head and spine and week in, week out my neurological damage is becoming harder to ignore. My body goes into shock if I stand for more than a few minutes and I have tachycardia, tremors, and visual/hearing disturbances.
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 8 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.
***HOW CAN YOU HELP?***
I have FOUR MONTHS to fundraise within the region of £150,000 for the operation with a US surgeon who has developed a method to successfully complete this treatment on an EDS patient (95% success rate).
The alternative is not an option I am willing to consider; My beautiful babies deserve their healthy, happy momma back and I have way too much to live for to let this condition win.
A Facebook page has been set up to share the story and spread awareness at www.facebook.com/savingsamantha
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