Help me fund Specialists Life Saving Spinal Surgery.

Hi, my name is Jess, and I am fundraising for my condition Neuro-Cranio-Vertebral Syndrome- Filum Disease. This is a chronic condition which causes decent of the cerebellar tonsils, idiopathic scoliosis of the spine, low-lying cous medullaris, multiple disk disease (crushed vertebra) and fluid buildup in the spinal cord causing cysts (Syringomyelia). In layman’s terms, the filum terminal is fibrous tissue which extends the whole length of the spinal cord, mine is under too much tension resulting in all the above conditions. The operation required will cut the filum terminal releasing the tension.

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Although this disease is congenital (develops in the womb), I was only diagnosis 10 years ago (age 22), since then I have been fighting for treatment on the NHS. Due to the rarity of this disease consultant neurologists have been bouncing back my referrals and not offering me any treatment/ follow up scans or appointments. Concluding I am a rare case and not knowing how to treat me, resulting in my condition progressing. This and the physical demands of my job (a Marine Biologist/Expedition Guide which I now cannot return to), forced me to seek answers overseas, I have attended a clinic in Barcelona where specialist neurosurgeons concluded my case is now severe and rare because it's continuously progressing. Due to my physiological state continuously changing I am under time pressure to receive the treatment. They have recommended a spinal operation to halt the progression of the disease. This will not treat the lifelong and limiting symptoms, but it will halt them from progressing, saving my quality of life. There are over 100 symptoms caused by this disease. This specialist treatment is not available on the NHS it is exclusively performed at the Institut Chiari & Siringomielia & Escoliosis of Barcelona.

How the funds raised will be used:

£19,800 is the total cost of the operation.

£550 post-operative medication.

£1,950 pre and post-operative MRI scans.

£700 for pre and post-operative consultations.

£2,000 for a physiotherapy, flights, accommodation, living cost in my 6 months to a 1 year recovery.

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A little about me:

As breifly mentioned I work as a Marine Biologist in the renewable energy sector and as a Polar Expedition Guide.

Although I feel extremely lucky to pursue this career, due to the stringent medicals needed to work offshore I am now unable to continue in this line of work. Which is heart-breaking when you have spent years specialising and working to achieve your dream job. However, I believe everything happens for a reason, maybe my path in life is changing and I have another calling.

Running is another love of mine; it has brought me closer to a community of likeminded people and new lifelong friends. I also love the 'runners high' and get excited just by putting my trainers on!

Unfortunately this is another passion of mine which the specialists have told me to significantly limit due to the impact on the spine and whole central nervous system from pounding the pavements. Running is a wonder drug and does amazing things for my mental health, so this is also a massive blow.

Finishing a 5K and puppy cuddles at the finish line is double endorphins :)

This brings me onto my next passion which I am grateful to say will always be part of my life..... DOGS!

Nothing in this world will love you like a dog, so wherever I am, you can find me knelt down petting a dog from Cornwall to Ushuaia (the most southernly city on earth). From pets, street dogs to working dogs they have all mastered unconditional love.

Another hobby which I love and is amazing for endorphins is cold water submersion, whether polar plunging in Antarctica, ice bathing in my back garden or sea swimming in Cornwall.

I also enjoy taking inappropriate photos when traveling this wonderful figure was in Rio De Janeiro.

As you can see I am full of life, love to travel and explore, but my most favourite place in the world is Whitsand Bay, Cornwall (home).

Finally, I want to leave you with this, never look back always look forward. Time is not a given so use it wisely, we never know the true value of our freedom therefore take nothing for granted.

I really appreciate you taking the time to read my story.

I am eternally grateful for all the support. xx