Disability: Bedbound Gwynedd woman can only stare at ceiling

"I'm working very hard every second to stay alive, but it's increasingly difficult."

Jenny Rowbory is 35 and has been bedbound for well over a decade now.

A genetic condition means ligaments in her neck cannot support her head and she now spends every day staring up at the same patch of ceiling.

Her only hope is life-changing surgery in the USA but her family estimate it will cost £750,000 - money they simply do not have.

Her mother Ann shakes her head: "No-one should have to live like this, and to know that money is the only reason."

• Joint popping: Ehlers-Danlos Syndrome

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Ann and her husband Ian care for their daughter around the clock at their home in a rural village in Gwynedd, north Wales.

One of them is on hand at all times and they never leave their house together in case Jenny needs help.

"One of us always has to be here. If she drops something, who's going to pick it up? She can't," said Ann.

"If anything happens in her room she can't sort it out by herself."

Before becoming ill, Jenny - sat holding the netball - was passionate about sports and loved outdoor activities

Jenny had been an active, sporty schoolgirl and teenager and was throwing herself into life at university when she first became ill in 2004.

Today, she cannot do anything for herself, relies on bedpans and is unable to bathe, shower or dress herself.

She was initially diagnosed with myalgic encephalomyelitis - or ME - sometimes known as chronic fatigue syndrome.

It left her experiencing chest pains, exhaustion and muscle spasms and she was bedridden for much of the time, but there was worse to come.

In 2015, Jenny was told tests revealed she had vascular Ehlers-Danlos syndrome.

The genetic disorder means her body produces faulty collagen, a protein that is a vital building block of supporting connective tissue, such as ligaments and tendons.

It can lead to overly flexible joints, skin conditions and, in rare cases such as Jenny's, fragile blood vessels.

Instability in Jenny's neck became life-threatening in 2020 and she had an operation to fuse bones in place, but it was not a success.

What is Ehlers-Danlos syndrome?

• Ehlers-Danlos syndrome (EDS) is the name for 13 rare inherited conditions that affect connective tissue

• Connective tissues act like a glue to support the skin, tendons, ligaments, blood vessels, internal organs and bones

• Jenny has a severe form of EDS which means she has spinal instability, especially in her neck

• The vascular form of EDS also means she is at risk from weakened blood vessels

• You can find more information about the syndromes at Ehlers-Danlos Support UK

Jenny has been left unable to move her head for fear of risking more damage or reducing blood flow.

"Various sections of my neck feel like they're being pulled apart in different directions," she wrote in a recent post on her website, which records what her life is like.

"I have to spend 18 hours a day straining to hold my neck and head in a certain position."

Since the failed surgery, Jenny and her family said they had run out of treatment options in the UK.

Instead, they have pinned their hopes on a specialist neurosurgeon in the US, believed to be only one of a handful in the world who understand Jenny's condition.

The family said the expert was the only one in the world specialising in reversing neck fusion operations and has told them Jenny would require at least three surgical procedures to offer any hope of improvement.

But it comes at a price.

Jenny would need a full medical air-evacuation team to get her to the United States, then there would be the cost of surgery and recuperation.

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"To know there is this neurosurgeon out there who has the experience to help her and not to have the money to be able to get her there - it's just so frustrating," added Ann.

Despite a daunting price tag, Jenny and her family have been determined to raise the cash they need.

Jenny has always had a passion for poetry and launched a book of her collected poems last September, called We Are The Winter People, with proceeds going towards her treatment costs.

In 2020, during the Covid lockdown, a special evening was streamed online, featuring support from the likes of Oscar winning actress Olivia Colman and comic Lee Mack.

Jenny's parents Ian and Ann Rowbory with the toy giraffe named after her - they hope it will help raise awareness about Jenny's plight

In her latest bid to reach the surgery target, Jenny is asking people to help her transport a giant cuddly giraffe around the world, taking pictures of themselves with Jenny the giraffe, while tracking it online.

"It would create a story which people then could follow hopefully, and that would then encourage people to think of donating," said Jenny's father.

"How she has dealt with it, I haven't the faintest idea. As parents, we have just looked on and offered any support we could.

"But for her, she is living through it - she is living through the nightmare."