The surgery is not available on the NHS for EDS patients. Thankfully, we have discovered a UK surgeon who has experience of performing the operation I need on people with EDS. Previously, we only knew of three surgeons in the whole world - one in Spain and two in the USA - who have the expertise to do this surgery on EDS patients.
The earliest that this UK surgeon can admit me into hospital is 13th January, with surgery on the 16th. So I am trying to hang on for dear life until then. It seems an impossible feat to wait that long at the moment and my situation is acute and life-threatening. I’m hoping to hang on just long enough for the surgeon to save my life. I don’t know if I can last that long but I will give it everything I have.
However, the surgery, scans and hospital stay are going to cost £34,000*. So I have 15 days to raise enough money to save my life. Please give what you can and share this fundraising page both with individuals and with your networks as much as you can. I’m so very grateful for anything you can give.
I love my parents and brothers and nephews so very much and I desperately want to stay alive to be with them longer.
*£34,000 is a conservative figure of the costs as it only includes a 6 day stay in hospital. Ideally I’d like to raise more than £34,000 because I know that I’ll need more days in hospital (due to needing extra recovery time due to how long I’ve been severely ill and bed-bound). The £34,000 also does not include transportation costs or accommodation for my parents for the duration of my hospital stay.
My name is Jenny Rowbory, I’m 33 years old and very much want to stay alive!
I have been severely ill and bed-bound for 15 years after suddenly becoming ill in my first term at university. I’ve been diagnosed with very severe, multi-systemic Myalgic Encephalomyelitis for most of this time but it wasn’t until 2015 that I was also diagnosed with EDS and it wasn’t until May 2017 that I began to get overt symptoms of instability of the cervical spine and atlas, with numbness, temporary paralysis, lymphatic fluid stagnation and severely impaired blood supply to my head, neck and later, the whole body. In October 2018 I was diagnosed with AAI (atlantoaxial instability) and CCI (craniocervical instability), which have continued to deteriorate. The reduced blood and lymph circulation to the whole body has continued to diminish as a result.
A bit more about me:
I’m a poet. The poem that I’m most proud of is called ‘Gethsemane’, which you can read by clicking here
I’ve also had a collection of my poems published by Longman, called ‘Rainbows in my eyes’. And I also did an online poetry collection after that called ‘Then the whispers started’, which you can read by clicking here :
I’m on twitter as @Stroopwaffle.
Here’s a photo montage video of the first 18 years of my life, the years before I became ill, which my parents made for me in 2014:
My website and blog can be found here.
- Laura Duhan Kaplan
- Archana Sharma
- Kate Wharton
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