A woman living with a halo head brace that keeps her in a fixed lying position is raising money for life saving surgery. She has just two weeks to raise £46,000 for the operation that she says is her “last chance at life”.
Melanie Hartshorn, 32, from Cramlington, Northumberland, suffers from Ehlers-Danlos syndrome a rare form of muscular dystrophy that causes her joints to dislocate, including her skull, neck, and spine. Wearing a metal halo brace helps to prevent this and the constant seizures her condition causes.
However, the halo is not a permanent fix and Melanie is raising money to have a major operation that would fuse her neck to her spine, Mirror reports. Currently Melanie wears the halo 24/7 which causes a “lot of pain” and means she must spend her life lying down.
The surgery to fuse her spine is booked for next month in Spain, but will only happen if Melanie can raise £46,000 more. Melanie’s target was £100,000, around £54,000 has been raised so far.
With time running out, the Biology graduate 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.”
Melanie dreams of becoming a primary teacher, but her current condition means that even the slightest tilt of her head causes her to stop breathing, have seizures, or become very nauseous. She relies on the help of her mum and a carer.
She says: “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 graduated with a BSc in biology at Newcastle University in 2016 and attended her graduation ceremony on a stretcher. She has undergone a number of operations in Spain, including one to fuse her spine and neck together in 2017.
Whilst this was a success, four screws in her vertebrae snapped and she has been wearing the halo since May 2021. The old screws can’t be removed, which means surgeons must access her neck via the throat.
Melanie 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 chance at life."
Donations to Melanie's Mission To Live can be made here.
