Mandy suffers from a rare genetic disorder called Ehlers-Danlos Syndrome (EDS). This causes her body to produce collogen incorrectly, making many parts of her body too stretchy. For many years the only major effect that this had on her was to cause hypermobility in her joints, however since 2014 it has been having more serious consequences.
The cervical spine is the top portion of the spine which forms the neck. It consists of seven vertebrae and protects the spinal cord, brain stem and arteries which supply blood to the brain. The vertebrae of the cervical spine are held together by a combination of ligaments and muscles. Because of her faulty collagen Mandy's ligaments are much too lax which allows her vertebrae to move in ways that would be impossible in a healthy adult. This unusual movement is causing havok with the nerves and arteries that the vertebrae are supposed to protect.
The surgery will fuse Mandy's skull and top vertebrae together using screws inserted into her bones, metal rods connecting them together and a bone graft placed over the top to secure it. This will significantly reduce the range of motion that Mandy has in her neck, but will also prevent further damage being caused to her brain stem.
After the surgery there are a range of possible outcomes and it is difficult to predict which will occur. At the very least the progression of damage caused to Mandy's brainstem should stop and the risk of paralysis and death due to dislocation will be significantly reduced. We hope, however, that the surgery will also alleviate some of her current symptoms and get Mandy back to the independent life she used to have.
But probably without any contact sports. 🏉🚫
There are only a handful of neurosurgeons in the UK who are able to perform the surgery that Mandy requires and none of them are trained in the special technique and care that is required when performing it on EDS patients. The combination of Mandy's conditions is so rare that there is simply nobody in the UK trained to fix them. The closest surgeon who can perform the surgery is in Barcelona. He performs this surgery for sufferers throughout Europe and has already helped several young women that we have come to know as they have been fundraising in their own areas and countries.
The surgery that Mandy needs is not performed within the Spanish state healthcare system, only privately. Because of this we have to pay the full private cost for surgery.
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