A woman with a condition that means her body literally cannot hold itself together has made a heartbreaking plea to the NHS.

Just three months ago, writer and blogger Carrie Beckwith-Fellows was on stage giving an inspirational talk to hundreds of people.

These days she is virtually bedridden, has to be fed through a tube directly into her heart, and can no longer remember her own wedding day to wife of two years, Lisa.

Now Carrie has spoken of the heartbreaking prospect of potentially “spending the last few years of my life fundraising” for an operation that is not available on the NHS for people with her condition.

At just 37 years old, she accused the NHS of “giving up on me when I have so much left to give to this world”.

Carrie suffers from Ehlers Danlos Syndrome - a rare condition that weakens the connective tissues and means the body literally can’t hold itself together.

Carrie Beckwith-Fellows, of Kielder
Carrie Beckwith-Fellows, of Kielder

She has now developed a complication called Cranio-Cervical Instability that is causing her skull to sink into her spine.

Carrie’s EDS is at the severe end and as her organs continue to go into failure, her condition is now classed as life-limited.

Her only hope is lifesaving specialist neurosurgery in Barcelona to fuse her head and neck together and put a halt to the debilitating symptoms.

Carrie, like fellow North East EDS sufferers Melanie Hartshorn, and mother and daughter Janine and Ellie Gray, has been forced to launch an online fundraising campaign to raise the £70,000 needed for the surgery, which is not available for EDS sufferers on the NHS.

Now Carrie has said: “The NHS needs to start doing something because there are too many people with EDS who are desperately ill with Cranio-Cervical Instability.

“We have been left to die a slow, painful undignified death or fundraise extortionate amounts of money, with some people selling their homes, getting into severe debt and begging people for donations, all while being extremely ill.

“There are too many of us now with EDS who need this surgery, and recognition that CCI is real, for the NHS to continue to ignore it. People with other conditions can have this surgery here in the UK but patients with EDS can’t.”

Once a freelance writer and blogger who made regular contributions to the Huffington Post, Carrie is now confined to bed at her home in the remote Northumberland village of Kielder.

While Lisa, 34, has also had to put her career as a fiction writer on hold to care for Carrie 24/7.

Lisa said: “Carrie is a wonderful woman who, until recently, had a passion for life and appreciated every single moment that it gave her.

“She is autistic and in June she went to Lithuania to give a Tedx talk to help raise awareness of autism.

“She helped a lot of people that day but it came at a great personal cost and her health declined dramatically when she got back.

“She’s been bedridden since then - she only goes out to essential hospital appointments,

“Carrie also has cognitive issues, memory loss and is losing her vision due to the CCI - she struggles to find words and often can’t tell the time.

“She can’t even remember our wedding day now, which is heartbreaking.

“Before the CCI, she was a keen blogger and vlogger, who raised awareness of EDS by vlogging about living day-to-day with a rare, life-limiting condition.

“Even now, she still helps to run the Gastroparesis and Intestinal Failure Trust, a charity for people who have similar intestinal problems.

“Carrie has inspired many people, helped many people, but now she desperately needs help herself.”

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.”

To help go to www.youcaring.com/carriesfund