Young woman forced to raise funds to buy her own wheelchair to avoid 'permanent lockdown' in Milton Keynes
Sophia is housebound because her current chair is too painful for her
A young disabled woman who spends ever day in pain has been forced to launch a fundraising campaign to enable her go outdoors and regain her independence.
Sophia Davis, 28, lives with a rare genetic condition called Ehlers-Danlos Syndrome, which affects the body's connective tissues.
"It affects me in many ways but mainly with chronic pain and dislocations. It also makes walking difficult and extremely painful and I am reliant on mobility aids to go out," she said.
Sophia's current wheelchair is totally unsuitable for her, particularly for outside use, and so badly fitted that it actually causes her more pain.
She describes it as a "nightmare" to lift and hard to self propel up hills and on surfaces that are not smooth.
But a new more comfortable and more lightweight chair, built for outside use, costs £1,660 and is not available on the NHS. Without one, Sophia fears she will be unable to leave her Beanhill home and her life will become a permanent lockdown.
Two months ago, in desperation, she started a Go Fund Me page. Despite a slow start, her campaign has picked up momentum in the last few days as this month is Ehlers-Danos Syndrome Awareness month.
Sophia said: ‘Thanks to some amazing people who have generously donated we are now only a third away from the goal. I am hoping that with support from the local community I can get this over the line. Having a lightweight manual wheelchair will offer me so many more opportunities. I will be able to navigate paths and different surfaces more easily. In future I’d like to do some volunteering and think about a job. At the moment that’s impossible.’
She added: EDS is a genetic condition which affects the body's connective tissue. It affects me in many ways but mainly with chronic pain as well as dislocations and subluxations which make every day tasks difficult. It also makes walking difficult and extremely painful.
"Wheelchair services have already denied any help with the wheelchair that I need unless I am able to move from my inaccessible bungalow.
"Being able to have the correct wheelchair that meet my needs will make such a difference. It will be able to limit some of the pain that I am currently getting in my legs in current wheelchair, it will be custom fitted to me and more comfortable, allowing me to be able to use it more."
This will give Sophia much need independence she is out, and enable her to visit community facilities.
"It will also be able to offer me so many more opportunities and even allow me to be able to carry out work or volunteer opportunities in the future," she said.
It will also be so much lighter and be a lot of easier for me or my carers to be able to get it in and out of the car, I will also be able to able to navigate paths and difference surfaces with so much more ease as well.
You can read more about Sophia’s fundraiser here.
To find out more about Ehlers-Danos Syndrome and Awareness Month 2021 visit here.