A woman who is confined to her bed has been fitted with a new 'halo' brace which is keeping her alive - but she's still desperate to raise £100,000 by October for lifesaving surgery.
Melanie Hartshorn suffers from a genetic condition called Ehlers-Danlos Syndrome (EDS) which causes her skull to dislocate from her neck and spine. It has left the 32-year-old unable to sit up and has resulted in her spending most of her life lying down.
Melanie is currently being kept alive by a surgical halo vest which she wears 24 hours a day. The brace was broken for three months and the smallest of movements caused her to stop breathing, have seizures and suffer from nausea.
On Saturday night, Melanie returned home from a £7,000 trip to Barcelona in Spain where she was fitted with a new halo. However she says it's only a short term solution and she needs to raise £100,000 for a major operation which will fuse her neck to her spine.
Melanie, who lives in Cramlington, Northumberland, said: "The halo was just getting worse and worse and breaking more and more. The screws were starting to snap inside it. It was a long time and I had to lie flat on my back all the time. We had it tied with cable ties to try to keep the screws in it.
"They had a terrible time trying to get a new halo and couldn’t actually get a new one - so this one is one they had in the cupboard luckily! As soon as they released me, when they changed the halo, I stopped breathing and I started fitting.
"I'm happy that I'm in a new halo but how long is it going to last? It could break again so it's a bit of a worry. The halo is keeping me alive at the moment but I can't live in one.
"This has proved I one hundred per cent can’t live in a halo. It’s proven that I’m one hundred per cent making the right choice going ahead with risky fusion surgery as it’s my only option."
For several years, Melanie has been travelling to Spain for surgery, which isn't available on the NHS, to stabilise her spine. She has been forced to wear the halo as four broken titanium screws in her vertebrae have caused the fusions to be unstable.
Melanie had her neck and spine fused in 2017 in her first major operation in Barcelona and is facing another stint on the operating table due to the broken screws in her neck. However the surgery will have to be carried out through her throat as it is not possible to operate on her back. She is desperately trying to raise money so the surgery can take place in October this year.
Melanie said: "I need to raise the money for surgery in October and hopefully this halo holds up. I can only sit up for a couple of hours a day, most of the day I have to be back in bed."
Melanie has set up a Go Fund Me page called 'Melanie's Mission to Live' to raise cash for the surgery. She has so far raised more than £17,600. She said: "It's a bit daunting, it's a lot of money to raise and not much time.
"I always feel really bad asking because it's been so many times I have had to go back. I feel bad asking again and again but people are amazing, they are so generous. It's really nice to see there's so many people supporting me."
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