A British woman who is the only person in the world to live full-time with a metal halo fixed to her skull is in a race against time to raise £70,000 in four weeks - or she will die. Melanie Hartshorn has Ehlers-Danlos Syndrome (EDS) and a rare form of muscular dystrophy, which causes all her joints to dislocate.
Her skull, neck and spine were regularly dislocating, causing life-threatening seizures. She underwent surgery last year to have a surgical brace, called a halo, screwed into her skull and spine to prevent the dislocations.
But after 15 months living in the halo – longer than any other patient in the world – the metal brace is breaking apart. Four titanium screws that were embedded into her spine have also snapped, which means she is unable to have a new halo fitted.
There is nothing doctors in the UK can do for the 32-year-old from Cramlington, Northumberland, but a Spanish surgeon has agreed to take on her case. She now needs a high-risk operation, which is not available on the NHS, to fuse her spine through her throat and chest.
A GoFundMe appeal has raised £30,000, but she is £70,000 short of the £100,000 needed to pay for the complex surgery. She is scheduled to have the operation done in Barcelona on October 4, but it will be cancelled if she fails to raise sufficient funds.
If she is unable to have the surgery the halo is likely to break up completely - meaning it is only a matter of time before Melanie suffers a fatal dislocation.
She said: “Patients are only supposed to wear halos for six months, but I’ve had one on for 15 months, which is longer than anyone else in the world. Because the screws have snapped and it’s breaking apart I can’t get another one, so my only chance is this operation.
“It’s like living with a death sentence hanging over me. If I don’t get the funds that’s basically it for me.
“The next time I can get the surgery done will be next year, but by that time it’ll be too late. The halo won’t last that long.”
Melanie’s battle comes after years of fundraising to pay for lifesaving treatment. In 2017 she raised a staggering £160,000 to have her spine and neck fused and she was able to sit up and turn her head for the first time.
Tragically, just months later surgeons discovered four screws had snapped in her spine where the bone had not fused properly. She was fitted with a surgical halo as a temporary measure, which meant she must had to lie on her back 24 hours aday.
Her only chance of survival now is to have a never-before-done procedure to permanently stabilise her spine. Dr Vicenç Gilete, a renowned Spanish neurosurgeon, agreed to take on her case, despite it being the most complex and serious he has ever seen.
Melanie, who graduated from Newcastle University on a stretcher, still hopes to fulfil her dream of becoming a primary school teacher.
She added: “I’ve only ever wanted to work with children. I still have hope that I can raise the money needed for the surgery.
“I’m only 32 and despite all my health problems, I’m determined to keep fighting. I just hope I can raise enough money for the surgery but I am fully aware that time is rapidly running out.”
To donate, wellwishers can visit Melanie's fundraising page.
