Emily's Right To Life - Neurosurgery Fund

Five days before finding out that I was pregnant, I received the devastating diagnosis of Cranio cervical instability and Atlanto axial instability a condition where there is excess movement between the vertebra of the neck which if left untreated can lead to high cervical paralysis and even death.

This was caused during the intubation process for a routine appendectomy on the NHS in 2017, due to having a higher risk for complications from a pre-existing condition called ehlers danlos syndrome, a connective tissue disorder, that at the time we didn't know I had.

This whole process has been anything but easy, with the NHS dismissing my symptoms from the very beginning, we were left with no other option than to seek private care. It was through a private flex and extention MRI in the medserena in London that my instability was discovered.

We then send my imaging to the nearest private leading specialist in Craniocervical instability and Atlanto axial instability, which at the time was in Barcelona. He confirmed my diagnosis and reccomended a posterior stabilisation surgery, pending further testing.

This report, the radiographers report and my images were then brought back to the NHS and we obtained a refferal to the Walton center, "the only specialist hospital trust in the UK dedicated to providing comprehensive neurology".

After meeting with a team of three neurosurgeons we were informed that surgery would not be available on the NHS until my "measurements had deteriorated further", due to "Outdated NICE guidelines", we were told that no matter how severe, debilitating or dangerous my symptoms become until my measurements increased "Their hands are tied".

They informed us that they didn't agree with the NICE guidelines, as they work on a "measurement not symptom basis" and they we're planning to complete surveys on post fusion CCI & AAI patients, who had been forced to obtained treatment abroad to attempt to challenge the NICE guidelines.

We then found out that a private neurosurgeon in the UK had began performing the complex fusion surgery's on patients with EDS at a fraction of the cost of Barcelona, which was weighing in at a whopping, €100,000, but we needed to wait until I had given birth, to have the additional scans required to make a decision, on if fusion surgery is truly the best way forward.

Im now a mother to the most beautiful little girl Freya, our little miracle who inspires me every day to keep fighting because her future is just as much at risk here as mine, all I'm asking for is the opportunity to watch her grow up, to protect her and support her to thrive.

We're now in the process of organising the scans that my private UK neurosurgeon needs, which includes either a dynamic CT scan or a digital motion xray and an appointment with him to discuss my treatment options.

Whilst a fusion surgery has previously been reccomended, we are still hoping to explore less invasive treatment options such as plasma, prolo or stem cell therapy, as the fusion surgery is an incredibly complex surgery, that does comes with significant risks and should only ever be a last resort.

We are fundraising towards the cost of any medical expenses related to my condition, as we have exhausted all of our financial options and honestly have no where else left to turn.

Thankyou