ITV Tyne Tees has been out to Barcelona to spend time with Melanie Hartshorn as she recovers from a major operation to fuse her neck and her spine together.
She had spent at least five years of her life lying down –bed bound due to complications from Ehlers Danlos Syndrome.
Now Mel dreams of being able to bake cakes with her niece, go out for a meal and visit friends.
She says her wish is that others are inspired by her story and that it provides hope for anyone else living with a serious condition or disability.
Without this operation she was at risk of death as her neckand spine were so unstable she was in danger of ‘internally decapitating’,suffering irreversible damage to he spinal cord.
What is Ehlers-Danlos Syndrome?
It’s a genetic condition that means her joints are weak and dislocate.
Her neck and spine were collapsing and dislocating, her neckwas not strong enough to support her skull and she suffered up to 40 seizures aday, constant pain and headaches, and she was unable to sit up or walk.
Her only hope was an operation to fuse the spine and necktogether.
How was the operation done?
This was done by a team in Barcelona, at the Teknon Hospital lead by Dr.Gilete and Dr. Oliver.
The team are starting to specialise in EDS cases, and agreed to operate on Mel even though it was one of the most extreme cases they have seen.
Mel was unable to get the operation done in the UK.
The EDS UK charity say they are not sure why this is but there is a feeling that it was deemed to risky and that there is a limited understanding of the condition and it’s complications.
NHS England sent us a statement after we asked them about where the surgery is available.
“The NHS does fund this treatment when it is recommended by clinicians. When clinical specialists assess patients for complex surgery, they must weigh the risks and benefits for their individual case.”
The surgery involved removing one of Mel’s ribs and using it with screws and metal plates to secure the vertebrae and neck together making it solid and stable again.
WATCH: Mel's surgeons talk about why the operation was so important
What does this mean now for Mel?
Mel will always need a wheelchair. Her other joints such as in her knees and wrists are too weak for her to ever be able to walk for any distance – although it may be possible for her to walk a little in the future with crutches.
This operation means that she can now sit upright without seizures for the first time in years. Without this operation there was a danger she may have died or suffered irreversible damage to her nerves and spinal cord.
Mel needs to build up her strength and she will eventually be able to use an electric motorised wheelchair to get around and enjoy a good quality of life.
WATCH: Mel talks about her hopes for the future