Northumberland woman who spent longest time in 'medical halo' stands up as dream becomes step closer

Melanie Hartshorn spoke to ITV News Tyne Tees presenter Amy Lea about the progress she has made despite the challenges of living with a rare genetic condition

A woman thought to have spent the longest time in a 'medical halo' has stood for the first time as she takes a step closer to making her dream of becoming a teacher a reality.

Melanie Hartshorn, from Cramlington, has a rare genetic conditions called Ehlers-Danlos Syndrome which means the tissue connecting her joints are weak and 'hyper flexible'.

Treating the condition has seen her fundraise tens of thousands of pounds to travel several times to Spain for major life-changing and life-saving surgery.

She had her neck and spine stabilised in Barcelona in a major operation last Spring for what she hopes will be the last time.

And just more than one year on from her last life-saving surgery, she has been learning to stand for the first time in years and is volunteering in a primary school.

Speaking to ITV News Tyne Tees presenter Amy Lea, she said she was finally looking forward to looking to the future.

"It's been a lot of work - a lot of work to get here - so it's nice that it's finally happening because sometimes I look back and think the last five or six years, it's just been operation after operation and it felt like it was never ending," she said. "So it is really, really nice that I put that chapter behind, hopefully."

For years, Mel was unable to sit up and spent almost all of her time in bed.

She suffered seizures, vomiting, dizziness and the almost constant dislocating of her neck and spine.

What is Ehlers Danlos Syndrome? Find out more about the condition Mel has here.

Along with the help of her mum and a fundraising community built up online, she raised tens of thousands of pounds to travel to Spain for an operation to stabilise her neck and spine.

At one point, she was fitted with a medical halo to try and prevent a potentially fatal seizure, while she tried to organise and fundraise for a return trip to Barcelona to re-stabilse her neck and spine.

It is thought she was the longest surviving medical patient to wear one.

Mel, who is still in her early thirties, has now recovered well from the procedure.

She can use an electric wheelchair and is strong enough to sit up in it for a number of hours.

In recent months Mel managed to stand up for the first time years. She is now working with a specialist physiotherapist to improve and continue her progress.

Mel is also working hard to make her dream of becoming a teacher a reality.

She volunteers once a week at Kingston Park Primary School, in Newcastle, where she helps children with their reading skills.

Mel said: "They get so excited. It's lovely. And there's a couple of them that always come and give us a hug and say hello and tell us about their week."

She continued: "I am a lot happier, a lot happier than I was and so grateful for all those who have helped donating and supporting to get me this far....I feel really lucky."

Deputy headteacher at the school, Suzanne Cowell said: "The children absolutely love it when Mel comes in to read.

"They get very excited....Mel is obviously a very inspirational volunteer who demonstrates all those skills and qualities in every day of her life all of those personal skills and qualities we want to enhance in the children like courage, determination and resilience.

"She's just an amazing role model."

In the future, Mel hopes to be able to live independently in an adapted bungalow and become strong enough to stand for longer - and perhaps even take a few steps.

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