Melanie Hartshorn: Cramlington woman needs £100,000 to pay for life-saving surgery

Melanie Hartshorn, 32, suffers from Ehlers-Danlos Syndrome (EDS), which causes very flexible joints and stretchy and fragile skin.

Her condition also means her skull dislocates from her neck and spine, so she is unable to sit up and spends almost all of her time lying down.

She had her neck and spine fused in 2017 in her first major operation in Barcelona – a procedure not available on the NHS in the UK.

Since then she has returned to Spain for further procedures but now she is in desperate need of more surgery due to two broken screws in her neck where bone has not quite fused as it should.

Melanie, who lives at Sea View Villas with her mum Molly, explained: “Unfortunately now, with my broken fusion, it’s even more complicated and my surgery is so complex the only surgeon worldwide willing to take on my case and perform it is my specialist neurosurgeon in Barcelona.

“He knows me and my case very well and has spoken with other experts in India and America over the last year, and created the best surgical plan.

“I cannot be left like this, but it is going to be costly and so I desperately need all the help I can get with fundraising to save my life.”

The biology graduate is currently spending 24 hours a day in a surgical halo – a device which keeps her head and neck stable and unable to move – but this is is not a permanent solution, as halos are only supposed to be used for six months, and she has worn hers for a year.

Wearing the device also causes health problems, such as skull infections and abscesses. The pins go into the skull and need to be tightened weekly, but this means they move further into the skull bone and therefore need to be regularly replaced.

And due the number of replacements Melanie has had, she will eventually run out of places for the pins and without the halo she will die, as she will be unable to breathe.

The surgery will secure the unstable areas in her neck and remove the need for a halo, but is not available on the NHS because the procedure has not been approved in this country.

She said: “It’s a big worry obviously, but I’m kind of stuck, I’m in a desperate situation at the minute really and I don’t really have any other option.

"I’ve got to try to get the money and get this surgery."

Melanie’s nine-year-old niece Katia is a major source of support, and she said the youngster was helping her to keep her spirits up. She added: “We do loads of things together, we do lots of baking together.

"To be able to do things with her properly again is one of my biggest reasons to fight on.”

To donate, visit https://www.gofundme.com/f/melaniesmissiontolive2021

To find out more, visit http://www.melanies-mission-eds.org.uk/donate-now/.