In order to have life changing surgery, a Northowram woman is aiming to raise £40,000 and get the treatment she desperately needs overseas.
Ella Roy, 27, enjoys going out for meals and exercising at the gym, but a rare condition causes her to be in constant pain and at risk of sudden death.
“It’s an invisible disability,” she said. “I’m trying to live my life within my limits.”
Ella has Ehler’s Danlos Syndrome (EDS), a connective tissue disorder where the collagen is too stretchy and affects her joints and ligaments.
She has had problems with her joints and spine for around nine years and discovered she had EDS around six years ago.
Due to this condition, former gymnast Ella was diagnosed with cranio-cervical instability earlier this year where the joints at the base of her skull and throughout her cervical spine are partially dislocating.
As time goes on, Bradford-born Ella’s condition is deteriorating. “The neck is the most dangerous bit to be moving too much,” she said. “Compression of the brain stem could lead to paralysis or sudden fatality when it dislocates.”
She needs surgery to fuse her spine from the base of her skull to the top of her thoracic spine but the NHS do not currently perform this surgery on people with EDS due to its complexity.
This means Ella and her family have been looking outside of the UK for an answer.
The surgery is available in Spain and the USA and they are currently raising money to travel thousands of miles across the Atlantic to get the help she requires. Over £100,000 is needed for the trip including hospital fees, insurance and the surgery.
Ella’s family and friends are rallying round to raise as much as they can and there is also a Just Giving page for anyone who would like to donate.
The family is hoping to raise £40,000 which will cover the cost of the surgery itself.
The reality of having to raise the large amount of money has caused Ella a lot of stress and anxiety.
She said: “It’s hard enough having something that causes you pain and worrying that you might die from it, but knowing that it costs that much makes it ten times harder.
“Being able to have the operation in the UK would help a lot with the anxiety. I’m worrying so much about that.”
Ella hopes to raise the money by February next year.
Julie, Ella’s mum wants people to understand that although her daughter may look fine on the outside, there’s a lot of pain they can’t see.
“It’s an invisible illness,” she said. “People may see her going to the gym or out for a meal but they don’t know how hard it is.”
To donate, visit www.justgiving.com/crowdfunding/julie-roy