Hello, my name is Jessica, I'm a 38 year old single mother of the two most wonderful children in the world, I love music, the outdoors, being by the sea. I also have a very rare genetic condition which has left me fighting for my life and having to raise a massive £150,000 to fund my own life saving surgery in America.
If you'd told me three years ago that I would be saying that I wouldn't have believed you, I don't think anyone ever thinks something like this going to happen to them but it has and it's frightening, painful, frustrating and even though I have an amazing support network of family and friends, it's lonely.
I have Ehlers Danlos Syndrome (EDS) which in short affects all the connective tissue in my body causing painful and debilitating problems with my stomach, bladder and heart to name a few complications. I was finally diagnosed with this just over two years ago after spending my whole life in and out of doctors surgeries with various ailments that no one could diagnose, I've been tested for everything from diabetes to cancer.
When the EDS diagnosis came in I was actually relieved, I could now try to manage the condition through physio and medication, it can't be cured but it can be managed. After years of coping on my own this felt like a bit of a victory but all this changed at the beginning of the year when I woke up one morning with an indescribable pain in my head, unable to stand and slurring my words. Luckily my Dad was visiting and rushed me to A&E where I was immediately admitted to the stroke ward.
I was kept in for a week and tested for a stroke, brain tumour and MS, deep down I knew it was none of these things but yet another complication related to EDS, it was CCI - Cranial Cervical Instability. Unbelievably this condition actually causes your skull to slowly crush your neck causing constant agonising pain and eventually paralysis. Sounds like something out of a horror film doesn't it?
Unfortunately the doctors didn't think this was the case and without an upright MRI scan it can't be diagnosed and the NHS don't offer these. I was sent home in pain and with no answers. I think the NHS is amazing, but in this instance I just knew they were wrong. I'm a project manager by trade, although on long term sick leave at the moment as I'm not capable of working, so I used all my career skills to research what was wrong and get some answers.
I found a private doctor that specialised in upright MRI's and with a knowledge of EDS, this time the diagnosis I received was a crushing defeat. I had CCI, which in the UK is a death sentence, as we don't have the specialised surgeons trained to treat CCI when complicated with EDS. I had no choice but to begin researching the life saving surgery I so desperately need myself and found that the only place in the world with doctors capable of treating me was in the US.
I found a fantastic surgeon in New York who after reviewing all my tests and results has given me a 3-4 month window to have this treatment, another terrifying blow. Not only is this a very short amount of time to raise such a large amount of money but very frightening to know that, if I don't succeed, I will very soon become paralysed, need to sleep with a machine to keep me breathing, be fed by a tube and eventually have complete organ failure. Even writing this now it doesn't really feel real.
So the race is now on to fund my surgery. The campaign has been in full swing for three weeks now and we've already raised over £50,000! I cannot get over how generous and supportive everyone has been, for complete strangers to donate money is both uplifting and very humbling. It's very hard to put into words how all of this feels but overwhelming goes some way to describing it.
I've always been a very independent person, I don't like asking for help and especially not for money so this has been hard for me to do, but it's the support of my family and friends and now complete strangers that is getting me through. In the evenings I look through the donations reading the comments and I'm moved to tears by all the amazing people out there, whether someone has given £5 or £50 it means so much. I've been featured in Marie Claire online, the i paper, local press in my home town of Swindon and the Midlands where I live now and also local radio. The press has been very supportive and invaluable for raising awareness and gaining donations. I cannot tell what all this support means to me.
I have good days and bad days, on the good days I'm working hard to gain more press coverage, thinking of fun ways to raise money and spending hours thanking all my donors individually and I feel if not physically but mentally strong. Then on the bad days it can all get too much and no amount of well wishers and donations can break through the constant pain I'm in. I just want to be better again, to just be normal, I want to see my beautiful sons finish school, go to university, maybe have children of their own, I just want a normal life free of pain.
I'm having a good day today, feeling really positive about everything and I know we can reach that all-important target, I like these days. I just want to say thank you to everyone who has donated so far and to everyone organising events on my behalf, you're all amazing! My next post may not be so positive but I want to tell my story as it's happening, I hope you stick with me.
You can read more about my condition and donate at www.teamjess.co.uk
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