Flexible ‘party trick’ now requires life-changing op
THERE would only ever be one winner when it came to the most flexible body – if Kate Mcginley was around.
As a schoolgirl, Kate’s party trick would be to dislocate her shoulders, hips, or fingers, then snap them back in. But what she believed was just an individual physical quirk was in fact something far more serious – and one which is now seeing her selling some of her most treasured possessions in order to undergo life-changing surgery.
“At school if we were in PE and someone said how stretchy are you, I always won. If people put their arms over their head, I could move mine 360 degrees. I could pop my hip out as a party trick. But doing that exacerbated my condition, and now I am in so much pain,” said Kate.
After giving birth to her son six years ago, Kate, who lives in Pontneddfechan, noticed she was losing strength in her arms and legs, and was starting to feel numbness and tingling sensations in her body – the symptoms of MS. But a later diagnosis proved she was suffering from a rare disease called Ehlers Danlos syndrome (EDS) – a rare connective tissue disorder that affects the body’s production of collagen, which provides
structure to the body’s cells like cement.
The collagen in anyone with EDS is instead like rubber and causes ligaments, skin, and joints to be extremely stretchy, which causes a multitude of problems.
In Kate, it means her brain is being pulled through the opening at the base of her skull, crushing her brain stem, which controls bodily functions.
“There are four surgeons in the world that can fix my neck and brain, and there is one in the UK,” she said.
“He thinks he can reduce around 80% of my symptoms. It doesn’t work overnight and it will take years to fully come through. I can’t exercise at the moment, and it’s even more challenging during lockdown, but once my head is stable, I’ll be able to swim again and that will help me improve.
“I spend a lot of time on the bed with lots of pillows because I can’t support my arms. It’s been difficult, particularly during lockdown. My husband is a key worker so he’s been going out to work, but his mother has come down from Scotland to help out.
“And Alex, our son, is a very kind and empathetic boy, and he knows I can’t go running around”.
The surgery Kate needs is not available on the NHS, but she believed she was covered by private medical insurance. However, at an earlier hospital
appointment, already in her hospital gown ready to go to theatre, she found out the company had pulled funding, claiming the operation was “experimental2.
Consequently Kate, who before she stopped work managed clinical trials to help patients gain data needed to support new treatments, and her husband Clark are selling possessions to cover the medical costs, which are more than £36,000.
“It was extremely traumatic when they pulled funding. I haven’t been able to work for 18 months, and I just want to get back to work and continue my career in medical science.
“They are going to be filming my operation; I told them you are not going in my brain without me having a look!
“We’ve been selling everything we can to raise money. We’ve sold our car, and I’m selling my engagement and wedding rings. But I don’t care about those, they are just material things. I would much rather they just fix my brain”.
Kate has set up a Gofundme fundraising page to raise money towards the operation. And amongst those to have contributed are Hollywood star Michael Sheen, who has donated £1,000 towards the fund.
“Michael is a Welsh hero – I was so humbled,” added Kate.