Welcome

Hello everyone, and welcome to my blog! I look forward to sharing my journey with you in these pages.

Being told earlier this year that I need urgent neck fusion surgery to save my life was a lot to deal with, but I felt full of hope that finally there was something that could be done that would permanently relieve the pressure on my brain stem and enable me to overcome many of my chronic symptoms, such as my painful and disorienting seizures. However my specialised surgery isn’t available in the UK yet; all that is available to me here is end-of-life care. I felt like I was at the bottom of a deep, dark well and I could see the daylight at the top but had no way of getting to it. After considering my options it became clear I would need to fundraise to go to Europe’s first neurosurgical unit in Barcelona.

12^th September was the day I was thrown a lifeline, the day Dr Gilete in Barcelona agreed I was viable for surgery and that he was willing to take on my (very complicated) case. The urgency means my surgery has been scheduled for 9 November, and I have between now and then to raise £130,000. Yes, I confirm that is not a typo.

So, I have been thrown a lifeline, and I cling to it fiercely with all my strength. But I need your support, and that of all my family and friends, to help pull me up.

These past three weeks have been overwhelming, and not from a health perspective. My EDS is what it is. But I have been bowled over by the love, the support, the good wishes, and the practical help and financial gifts of so many people, some known to me but many unknown. My brother Jon and my close friends have mobilised, with the mantra that ‘failure is not an option’. As I write this, we have raised around £40k, and we are gaining momentum to make the seemingly impossible possible.

Words are not enough to thank all of you, although I hope this blog will be a place where my words can give something back. In the coming weeks I hope to share my journey to surgery and beyond and be able to give all those who care about me a place to see my health updates. I also want to use this tool to give a voice to others who share this journey, especially addressing issues that aren’t often shared – telling it like it really is.

Thank you for taking the time to read this. I’m feeling excited about my future and look forward to sharing my journey with you. Hope is on the horizon, and I thank God for it.

Sarah Gearing