Weʼve raised £0 to Samantha smith is a Mum of 2 who is currently in the USA undergoing lifesaving neurosurgery
- Closed on Tuesday, 17th October 2017
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My name is Samantha. I'm 30 years old, I live in Littleborough and am a single mum to two fantastic young children.
Earlier this year my life was turned around when I was finally diagnosed with a rare genetic condition called Ehlers Danlos Syndrome (EDS) after 10 years of misdiagnosis'.
I suffer excruciating pain and neurological symptoms daily and the EDS has recently caused the weight of my skull to crush my spinal cord and brain stem. I was told I had weeks to save my life. Surgery was not available in the U.K. As EDS is poorly understood here and no neuro surgeons are qualified to do the lifesaving operations I desperately needed.
In April this year we started to fundraise £150,000 for this life-saving surgery.
Only 3 surgeons world wide are qualified to complete this operation and its success rate is 95%.
We reached our first fundraising goal and I flew out to the US with family for my first operation which took place on the 11th July. This involved hard fusion of my neck down to near my shoulder blades, decompression of my spinal cord and the use of hardware (like a scaffolding) on my vertebrae.
Bone marrow was taken from my hip and mixed with crushed donor bone and live cultures; this forms a paste which will fill the unstable vertebrae. The paste solidifies over a 6month period and becomes like bone.
The surgeon also wove synthetic tendons throughout my unstable spine area in place of the useless, stretched ones. In the same operation, he also released my spinal cord which has tethered (attached itself) to my lower vertebrae and fused segments of my lumbar spine.
Three major surgeries in one day. I was lucky to survive.
During recovery we learnt that I have a gene caused by EDS which stops pain relief from working on me.
The pain was and still is excruciating.
I am now in recovery from this major operation, however 4 weeks on as we were ready to return home to the Uk we learnt my neck needed more immediate lifesaving surgery. On August 18th I had further surgery. We had to Increase the fundraise to £200,000 and the deadline has been pushed back. We still haven't reached this total to pay for my second surgery.
My beautiful babies deserve their healthy, happy mummy back.
I would like to thank all of the people far and wide who have donated and to all those who continue to do so.
I have now learnt that my whole body is unusually unstable throughout. No one could have predicted this. My neuro surgeon is the world renowned specialist in my condition; he has rarely witnessed such a degenerative version of the condition. We need to learn more about the cause of its fast progression. The tests will take time and money.
I'm returning to the U.K. In the meantime whilst we work on the fundraise and my rehabilitation .
Without a deeper understanding and hopefully a way to slow its progression my life will become a series of continuous fusions throughout my whole spine and hips.
I have no idea where I would be without you. I ask that you please continue to support me and my family on this time sensitive journey.
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