Help me to raise funds for Spanish op that will save my life
SURGERY TO FUSE HEAD AND SPINE WILL COST £100,000
BRAVE Carrie Beckwith-Fellows has a date set for a potentially lifesaving operation – but now faces a race against time to raise the cash to pay for it.
Writer and blogger Carrie lives with Ehlers Danlos Syndrome (EDS) – a rare condition that weakens the connective tissues and means her body literally can’t hold itself together.
The 37-year-old, who is effectively bedridden, is losing her sight through the rare genetic condition and no longer remembers her own wedding day to wife Lisa.
Carrie has to be fed through a tube directly into her heart, and a complication called Cranio-Cervical Instability is causing her skull to sink into her spine.
A deterioration in her condition has led to life-saving specialist neurosurgery in Barcelona, Spain, to fuse her head and neck together and repair damage to the base of her spine being booked for September 6. Now, Carrie and devoted wife Lisa are battling against the clock to fundraise the £100,000 needed for pay for the operation, which is not available on the NHS for people with her condition. Carrie, from Kielder, Northumberland, said: “Because of the deterioration, I need my neck fusion a bit further down than first thought. We have also discovered the bottom of my spine is also damaged which needs urgent surgery. If that does not get fixed it will cause paralysis from my waist down. My prognosis now is a lifelimiting one, but this surgery could potentially remove that.” Wife Lisa, 34, added: “When we found out how much Carrie had deteriorated, the GP wanted her to plan for the surgery in June but we couldn’t raise the money in that time. “We need people to know how serious this is, Carrie’s life is hanging in the balance. We’re pretty much having to raise a grand a day. “We have to do it, this condition does lead to death, but when there’s hope you have to reach for it.” Former freelance writer Carrie was a regular contributor to the Huffington Post before the condition took hold and left her bedridden. Just three months before her health deteriorated, she gave an inspirational speech in a TED talk to almost 1,000 viewers and thousands more on Facebook Live.
Carrie struggles on a daily basis to read or tell the time, and has even made plans for her own funeral in case they are unable to raise the money needed in time.
Lisa has put her career as a fiction writer on hold to care for Carrie, and she admits it is ‘heartbreaking’ to watch the condition’s debilitating impact on her beloved wife. She said: “For me, it’s heartbreaking and soul-destroying to see the woman I love like this. It’s heartbreaking to see her slip away day by day.”
The surgery Carrie requires is not available to EDS patients on the NHS due to concerns over the operation’s success rate and a lack of research.
It is the same procedure which brave Melanie Hartshorn, from Cramlington, successfully underwent in Barcelona in May last year.
The couple, who have set up a fundraising page titled #CarriesFund which has so far raised more than £5,000, have opened up on their frustration with the NHS and made a desperate appeal for help.
Carrie said: “It’s unfair, somebody with a different condition can have this surgery in the UK but I can’t. You would not be able to discriminate treatment based on race or sexuality – it’s so frustrating knowing this surgery has made massive improvements to others and it works the majority of the time.”
An NHS England spokesperson said: “The NHS does fund this treatment when it is recommended by clinicians. When clinical specialists assess patients for complex surgery, they must weigh the risks and benefits for their individual case.”
Visit www.youcaring.com/carriebeckwithfellows-756980.