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Mum selling her possessions to fund £35K surgery before rare condition leaves her paralysed

Marie Claire Dorking
·3-min read
Kate McGinley has been diagnosed with Ehlers Danlos Syndome (EDS). (Caters)
Kate McGinley has been diagnosed with Ehlers Danlos Syndome (EDS). (Caters)

A woman is selling her possessions to fund surgery that could stop her becoming paralysed by a condition which is causing her head to crush her spine.

Kate McGinley, 35, from Swansea, was diagnosed with Ehlers Danlos Syndrome (EDS), which affects the connective tissue between bones, organs, ligaments and skin, in January.

The condition means she is unable to support the weight of her head, which is crushing her neck and spinal cord, and means the mum-of-one has been left bed-bound, forced to walk with a stick and wear a protective collar.

Surgery for EDS patients is not yet covered by the NHS, so McGinley has sold her car, engagement rings and designer handbags in a bid to raise the £35,000 needed to have the procedure to strengthen her spinal cord done privately.

Read more: The WFH positions messing up your back and neck - and the stretches to ease any pain

Ehlers Danlos Syndome (EDS) affects the connective tissue between bones, organs, ligaments and skin, pictured a scan of McGinley's brain. (Caters)
Ehlers Danlos Syndome (EDS) affects the connective tissue between bones, organs, ligaments and skin, pictured a scan of McGinley's brain. (Caters)

“If my condition is left untreated I could end up paralysed," she said.

“I have to use a stick and wear a collar because my neck can’t support my head and my brain is being pulled down by my spine which is effectively crushing my neck internally.

“My husband has effectively lost his wife and my son has lost his mum."

Watch: British woman runs for the first time since being paralysed.

“I can’t do housework or go out for long, I’m bed bound most of the time and when I can get up all I can manage is a couple of hours on my feet before the fatigue and pain sets in," she continued.

“I’m desperate to get my life back and material possessions are just that.

“I’m selling anything and everything I can from Michael Kors handbags to my Mercedes car and my engagement rings.

“If it means I can pick my son up and get my life back, that’s priceless to me.”

Read more: Woman told her 34J breasts could ‘crush her spine’ crowdfunds private reduction surgery

McGinley in hospital. (Caters)
McGinley in hospital. (Caters)

McGinley, who is married to husband, Clark, 46, first started noticing the signs of EDS in 2015 after the birth of her son Alexander, now six.

These included fainting, going temporarily blind, temporary paralysis, fatigue, headaches and joint pain.

Initially she was misdiagnosed with Multiple Sclerosis and was also advised to see a psychiatrist before she finally got a diagnosis five years later.

Now, she needs surgery to strengthen her spinal cord and brain stem, but as there are currently no Nice guidelines for surgical treatment of EDS, the operation is not covered by the NHS.

Read more: Wheelchair-bound student left ‘zombified’ by painkillers ‘has a body that functions’ thanks to medical cannabis

Kate McGinley pictured with her son and husband. (Caters)
Kate McGinley pictured with her son and husband. (Caters)

McGinley now hopes to raise £10,000 by selling her possessions. She has also set up a GoFundMe page in the hopes of gathering the further £25,000 she needs to have surgery as soon as possible.

“At the moment the surgery is considered experimental because there are no guidelines for treating EDS but until the research is done and presented to Nice, there will be no guidelines," she says.

“Having the surgery would mean everything to me, this condition has already taken so much from me.”

To donate go to: gofundme.com/f/help-kate-save-her-brain-and-spine

Additional reporting Caters.

Watch: Robo dad, paralysed from the waist down, raises almost £14K for NHS

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