FOR Melanie Hartshorn, the situation is as grave as it gets – raise £100,000 by October for vital surgery on her spine or die.
To make matters worse, if that is possible, a ‘halo’ brace keeping her alive is currently broken leaving her prone to seizures and nausea with the smallest of movements.
Melanie, 32, from Cramlington, Northumberland, said: “This operation offers me the last chance of having a life.”
She has a genetic condition called Ehlers-Danlos Syndrome (EDS) which causes her skull to dislocate from her neck and spine. It left her unable to sit up and resulted in her spending almost all of her life lying down.
For several years she has been travelling to Spain for major surgery to stabilise her spine which isn’t available on the NHS and involved fusing her skull, neck and pelvis.
However, the fusions have become unstable because of four broken titanium screws in her vertebrae and she has been forced to wear the surgical halo vest 24 hours a day.
Melanie said a split has developed where the plastic clips meet the metal bars. “I’m waiting for the RVI to get me a new one. I’ve cable tied it at the moment on all four bars we have to keep tightening them. Its terrifying since it’s the halo that is keeping me alive at the moment.”
She added: “The serious neurological symptoms I get of micro movements are further proof that it is not a long-term solution and my life is in danger until a permanent surgical solution can be undertaken.”
It is the latest ordeal which Melanie has faced up to with amazing fortitude over the years. She had her neck and spine fused in 2017 in her first major operation in Barcelona, Spain and is now facing up to yet another stint on the operating table due to the broken screws in her neck – something she believes happened while in the UK.
And it will be the riskiest operation of the lot as more surgery through her back is not possible and the procedure will have to be done through her throat at the front.
“It makes it more risky. It’s a big operation but I have no choice,” said Melanie.
The Spanish surgeon who carried out the previous operations, Dr Vicenc Gilete, had originally told her he could do more and suggested she contacted experts in the US and India.
However, after a change of heart, he spoke to these other experts himself to come up with a new surgical plan.
If successful it will mean she won’t have to wear the halo. Melanie said: “I can’t live in the halo forever and I can’t live without it at the moment so I will die without this surgery. It is my last chance to have a life.”
Melanie has set a target of £100,000 to be raised by October for the operation to be carried out again in Barcelona.