Charlotte's Life Changing Neurosurgery

My name is Charlotte, I am 31 and I desperately need your help.

In 2003 I was diagnosed with Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome. I managed these conditions as best as I could – refusing to give in to the chronic pain and fatigue and pushing my body to its limits.

After graduating from Birmingham Conservatoire in 2015 with a degree in music I spent just a few short months working as a music teacher and a carer before my health deteriorated to the point that I was no longer able to work.

In November of that year I developed optic neuritus and got placed on high dose steroids. This had a domino effect on my body, and within weeks I was housebound, in unbearable pain and my body changed out of all recognition.

Almost five years later at the age of 31, and I am dependant on carers visiting three or four times a day to help me manage my personal care, cooking, cleaning and getting out of the house. I am dependant on walking aids and a wheelchair to move about safely outdoors, and I spend most of my time stuck at home. Although I try to stay positive, and do as much as I can to better myself, it is getting more and more difficult to function.

After years experiencing strange symptoms and severe headaches, I have finally been diagnosed with Chiari Malformation, Atlanto Axial Instability and instability at c3-4. My symptoms have worsened to include an inability to remain standing, loss of balance and sometimes the inability to move my legs at all, along with migraines, speech difficulties, visual changes and short-term memory loss. I have gone from being a fit and active independent member of the community to someone unable to work or function in just five short years. My illness has affected every aspect of my life, and it has been a truly harrowing experience to watch my life fall apart.

Following appointments with a number of specialists, it is clear that surgery is needed as soon as possible in order to prevent deterioration and permanent neurological damage. I have been told that I am currently at risk of my head fully dislocating from my neck if I knock myself in the wrong way, and of suffering a stroke any time I turn my head for too long.
I have a surgeon who has agreed to do the surgery, but it is not available on the NHS for people with Ehler's Danlos Syndrome and I am unable to cover the full cost myself. Therefor I am looking to raise money for both the surgery and aftercare costs.

In order for me to have this life preserving surgery I have with a heavy heart no option but to fundraise. The costs will be £26,725 toward the surgery and £4,000 to cover essential post op rehabilitation.

I am desperate to get back my life again and work toward my dream of becoming an art psychotherapist, so that I can help others experiencing both physical and mental health conditions in the future. Your support can help me to do this. Thank you.
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Emily Hiller 
Hemel Hempstead, East of England, United Kingdom