Help Ellen Recover from Rare Mosquito Virus

Hi!

My family and I are trying to fundraise so I can continue to access the best help and support I can get with my ongoing battle against Functional Neurological Disorder (FND). We have been overwhelmed by the kindness and generosity of people and we cannot thank you all enough!

I first experienced symptoms in September 2019, whilst I was at University in the United States on a Soccer (football) scholarship. It is believed that I was infected by a mosquito bite carrying a rare virus called West Nile Virus. Most people infected with the virus do not experience symptoms or only have a mild reaction. Only 1% of people infected with this virus experience neurological symptoms and unfortunately, I am one of those people. After a long stressful battle, I was finally diagnosed in January 2021 after having extensive testing in the form of blood tests, lumbar puncture (spinal tap) and many forms of diagnostic imaging.

Since I first posted about my diagnosis my physical and mental health has continued to deteriorate. My condition was continuing to worsen with ongoing symptoms becoming more debilitating, along with the arrival of new symptoms. My FND was taking me away piece by piece and I felt helpless as I had no control. I was having constant seizures and they had progressed into a much more aggressive form, very similar to those associated with epilepsy. However, unlike epileptic seizures, I was fully conscious and aware of what was happening to me, but I could not do anything about it as I had absolutely no control.

It was becoming increasingly unmanageable and scary for both my family and me. I was struggling to continue to fight the losing battle I was facing, and this caused me to lose my will to fight. My condition was taking a massive toll on my mental health, and I was struggling to accept that this was just going to be my life now and there wasn’t anything I could do about it. I started to question whether I would be better if I was no longer here, as I just couldn’t cope anymore. I didn’t have any real quality of life left and I did not want to continue to live my life this way.

As you can imagine everyone involved was very concerned for me as I urgently needed help, but we were at a loss with what to do. We had tried some things to help but they did not work and often made things worse. My FND consultants decided that due to the cost involved with the inpatient programme, the best approach would be for me to see the individual specialists from the neurological rehabilitation programme in an outpatient setting, as I needed help ASAP. The aim was to focus on my worst symptoms and try to improve the quality of my life, by attempting to get my seizures under control. I have been referred to see the relevant specialists to help me fight my FND both physically and mentally.

With help from previous fundraising efforts, I have been able to start this treatment privately, and this has enabled me to make some improvements to my condition on a day-to-day basis. However, this is an ongoing battle and something I must fight for every day, and I am only at the start of this long journey and need specialist support throughout. I have been referred for help under the NHS, but it has been 2 years since my referral, and I still haven’t heard from them regarding where I am on the waitlist for an initial assessment let alone any treatment. I have a long road ahead of me and I am still in need of some support to continue to access this specialist treatment. Private treatment is extremely expensive, but it's really my only option. We desperately need help to raise the funds I need to allow me to continue to get this treatment, as time is of the essence with my condition. Anything you can donate will be greatly appreciated and if you can share this page that would also be fantastic!