'It's the only thing keeping me alive' says Northumberland woman fundraising for major surgery

Melanie Hartshorn_June22_Facebook
Mel has decorated her halo with flowers but says it is broken and in desperate need of repair. Credit: Melanie Hartshorn

A young woman from Northumberland says she is facing yet another trip to Barcelona for emergency surgery.

Melanie Hartshorn has Ehlers Danlos Syndrome. It causes weakness and hyper flexibility in the joints, and complications from the condition means her neck and spine are dangerously unstable.

At the moment, her neck and spine are being held in place using a device known as a 'halo', but this is broken, and she has been told it was never intended to be a long term solution.

"Every time it comes loose & moves my spine slips out and I get so, so poorly off it.

"It causes projectile vomiting, tachycardia, excruciating pain, paralysis in my right arm and fingers, I hiccup constantly and I can’t breathe properly. All symptoms of brainstem compression, until we manage to tighten & secure it."

She's now fundraising for the trip to Spain where she is hoping the 'halo' can be fixed, ahead of another procedure she'll need later this year to try and secure her neck, skull and spine without it.

Mel has shared pictures of the problems with her 'halo' on her Facebook page Credit: Melanie's Mission To Live/Melanie Hartshorn

Mel's story

Melanie Hartshorn from Cramlington has a genetic condition called Ehlers-Danlos Syndrome (EDS), and complications from the condition have left the joints weak.

For several years she has been travelling to Spain for major surgery to stabilise her spine.

Her condition meant her skull was dislocating from her neck and spine, causing seizures and nauseous.

It left her unable to sit up and spending almost all of her life lying down.

Mel is now back to spending almost of all her time lying down to minimise the symtpoms Credit: Melanie Hartshorn/ Facebook

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 suffering more instability due to two broken screws in her neck where bone hasn't quite fused as it should, something Mel believes happened while in the UK.

Mel, who is 32, has been fundraising to pay for the procedures - costing tens of thousands of pounds each time.