A woman who lives in a halo brace has just two weeks to raise £60,000 for surgery that could save her life.
Melanie Hartshorn, who has spent most of her life on her back, has Ehlers-Danlos syndrome, which causes her skull to dislocate from her neck and spine.
The halo, which she wears 24/7, keeps her in a fixed position and stops constant seizures.
But it is only a temporary fix and Melanie, 32, needs a major op to fuse her neck to her spine.
Her surgery has been booked for next month in Spain – but can only happen if she has the funds.
Melanie set a target of £100,000 – but has £45,000 left to raise.
With time running out, she says: “I’m in a lot of pain. The operation will give me a last chance at having a life.
“I’m living in metal screwed into my skull in four places. I’m the only person in the world that’s been in a surgical halo for so long… 15 months so far.
“Without funds for specialist surgery, I will die. I stop breathing without the halo.
“But it isn’t going to last as it’s already broken. If I don’t raise the money, I’ll have to postpone the op to next year. I’ve no idea how I’m going to be then.”
The smallest tilt of her head can cause Melanie to stop breathing, have seizures or suffer nausea. Melanie, who is looked after by her mum and a carer, says: “The pain is through the roof and I feel, and look, so ill.
“I deteriorate after something like an asthma attack. All the coughing loosens my spine until it won’t stay in place. It’s unbearable.
“With less than two weeks left to go, not raising the funds and missing my chance for an op is looking likely. I can’t put into words how scary this is – it’s all I can think about.”
Despite her condition, Melanie, who dreams of being a teacher, lives as normal a life as possible. In 2016, she finished studying for a BSc in biology at Newcastle University and attended her graduation ceremony on a stretcher. She has so far had a string of ops in Spain and her neck and spine were fused together in 2017.
But four screws in her vertebrae snapped – so she has been wearing the halo since May 2021.
The old screws can’t be removed and surgeons must access her neck via the throat.
Melanie, from Cramlington, Northumberland, says: “It’s a nightmare. The screws are broken inside my bones.
“My surgeon has spent the last year trying to come up with a plan – it’s risky but will save my life.
“Once my neck is fused, I wouldn’t stop breathing and I’d be able to go out in my wheelchair. I just need the money.
“I can’t keep living in this halo but at the moment, I can’t live without it. I will die without surgery. This is my last chanceat life."
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