Cramlington woman Melanie Hartshorn issues urgent plea for donations as surgical halo falls apart

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

It also causes her skull to dislocate from her neck and spine, so she is unable to sit up and spends almost all of her time lying down.

Her neck and spine were fused in 2017 in her first major operation in Barcelona and she now wears a surgical halo 24/7, a device which keeps her head and neck stable.

However, this is not a permanent solution as halos are only supposed to be used for six months, and she has worn hers for a year.

The contraption – which enables her to breathe – is also now starting to fall apart as the screws keeping the halo intact are snapping off. They are so worn they will not turn, and the plastic connectors which hold the upright bars in place are breaking.

The surgery she requires will secure the unstable areas in her neck and remove the need for a halo altogether. However, it is not available on the NHS because the procedure has not been approved here, and will take place in Barcelona.

Melanie said: “The halo is the only thing literally keeping me alive, breathing and seizure-free.

"In the meantime I’m having to try and lie still on my back to minimise the pressure on the broken halo. Every time it comes loose and 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 also hiccup constantly and can’t breathe properly.”

After unsuccessfully attempting to have the halo replaced in the UK, Melanie needs to travel back to Barcelona for an emergency replacement which will keep her neck stable until she can have the life-saving surgery, hopefully by the autumn.

But in order for that operation to take place, she wants to raise £100,000 and only has just under £17,000 so far.

To donate towards Melanie’s surgery, visit https://www.gofundme.com/f/melaniesmissiontolive2021

For more information, visit https://www.melanies-mission-eds.org.uk/