Sarah's Story

Life is precious. I love mine, and I am determined to make the most of it – but I need your help. My name is Sarah Gearing, I am 40 years old and I am in need of life-saving spinal surgery which is unavailable in the UK. My only options for this surgery are in the USA or Spain. The great news is I have been accepted as a candidate for surgery by the neurosurgeon in Spain, and due to the severity of my case my surgery has been scheduled for 9 November. The less great news is that this leaves me just 6 weeks to raise the £130,000 needed to pay for my surgery and post-operative care. Without this crucial life-saving surgery it is unlikely I will still be here by Christmas.

I have a rare genetic condition called Ehlers Danlos Syndrome (EDS) which makes the collagen in the my body and connective tissues faulty (think of collagen as the glue that holds you together). My form of EDS means I have gastric and digestion problems, frequent dislocations of joints and vertebrae, constant pain and seizures which leave me feeling confused and disoriented. Right now my brain is herniating (dropping) out of my skull, crushing my brainstem and spinal cord. The surgery I need involves a total neck fusion and procedures to put my brain back where it belongs and permanently relieve the compression on my spinal cord.

(For more information on EDS)     Please click 'HERE'

I have been a full time wheelchair user for the last 20 years but I haven’t let that stop me from leading an active, full life. I am a bubbly lady with a passion for living well and helping others. I love to be outdoors with my gorgeous Assistance Dog, Otto, who is always at my side. He is my hero, having saved me from danger many times by alerting me to seizures, comforting me when I am in pain and doing many practical things for me – he’s an expert at sock removal.


With your support, I can get my life back. Having this surgery will enable me to look forward to a future without constant pain and seizures, to be able to sit upright for longer in my wheelchair and spend time with family, friends and to be able to go on ‘normal’ dates with my amazing boyfriend David who currently spends so much time caring for me. I can’t wait to take Otto out for walks in the woods once again, and it is my ultimate dream to one day visit my nephews in Australia.

I already spend a lot of my time helping and encouraging other sufferers of EDS, and now it is I who needs help. Only last year I was fundraising to help my friend Mel get the surgery she needed (I will never forget my wheelchair abseil down the O2 building in London!). When I recover from my surgery I am determined to continue to help and be an advocate for others with EDS and to pursue voluntary work, and your support will help make this possible.

I know it is not my time yet. I am so blessed to have some amazing people in my life and I won't give up when I have so much to live for! Words cannot express my gratitude for your support, I thank God for you all.