A 35-year-old mother was forced to sell cars and wedding rings to pay for life-saving brain surgery

A 35-year-old mother, forced to sell wedding rings to pay for life-saving surgery, says she wants a “fixed brain rather than a diamond.”

Her mother, Kate McGinley, suffers from a rare and life-threatening illness that causes her joints to bend “rubbery”.

As a kid, she stretched out like an acrobat and was able to command her shoulders, hips, and fingers to dislocate what she brushed off as a party trick.

But she knew little about her extraordinary talent being caused by a silent illness that began to deteriorate rapidly after her first childbirth.

She said her mother in Wales was only diagnosed in 2017 with Ehlers-Danlos Syndrome (EDS), a condition that affects the connective tissue that supports the skin, joints, and bones. Wales online.

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Currently, Kate is not covered by the NHS and is forced to raise £ 37,000 for brain surgery to address life-threatening conditions.

She explained that EDS is a rare connective tissue disorder that affects collagen production in her body.

“Usually, collagen provides structures to cells like cement. Mines are like rubber, and ligaments, skin, joints, etc. are all very stretched. This causes many problems that the body cannot deal with. Occurs.

“For me, I have postural tachycardia (POTS), which causes disability. headache, Thermoregulatory problems, blindness while standing, very high heart rate, extreme fatigue.

“The joints hurt very much because they are too stretched to support my body.”

Because of how flexible her body is, Kate is now suffering from an even more worrying problem-her brain is being pulled through the base of her skull, crushing her brainstem.

“Your brainstem is very sensitive and controls so many physical functions,” she said.

“This pressure causes numbness and weakness throughout the body, bladder and bowel problems, severe headaches, balance problems, and memory problems.”

Kate said her symptoms had become much more severe after giving birth to her six-year-old son, Alexander.

“EDS wasn’t aware of what I had until I gave birth to him. It was like a switch off shortly after I gave birth,” she said.

“For him, he only sees a tired and painful mother. He is a very well-tuned and empathetic kid. He is very kind and I walk the stairs 40 times a day. I’m aware that I can’t go up and down.

“Whether I go to Tesco or do Hoover, I can do at most one thing a day. Otherwise, I’m just in bed. He has things to me. Will come or sit next to me in bed and play with things.

“He very understands that it has become his daily life.”

Kate, who lives in the small village of Pontonezbechan in Powys, also has an unstable skull and neck, causing her neck to “crush”.

“Every time I turn my head, I get a lot of pain, my arms get stuck, and I can’t raise my head without support,” she added.

Kate added that her husband, Clark, 47, who works as an engineer, has also been struggling for the past few years.

“He feels like he’s lost his wife. This was all a heavy burden on his shoulders, as he had to regain slack in addition to being a key worker,” she said. ..

EDS affects an estimate of 1 in 5,000 and there are few or no treatment options.

“Ehlers-Danlos disease is the most under-researched and underfunded disease in the history,” Kate claimed.

“There is no NHS program for this and no support available, so folk medicine is the only option due to the lack of research data.”

According to Kate, there are only four surgeons in the world who can repair the neck and brain, one of whom is based in the United Kingdom.

“He is an EDS specialist who can stop 80% of my symptoms and regain my life,” she said.

“He fuses my skull to my neck and also gives me room to decompress my brain and reduce pressure.

“He also uses my data to create study data that will notify the national spine registry and eventually notify the NICE guidelines so that other EDS patients can receive this treatment in the NHS. I will. “

She claimed that she was denied compensation because her procedure was “”, even though she had private medical insurance through her work.

“I was in my hospital gown ready to go to the theater, and they withdrew money and refused me treatment. This is the most traumatic experience of my life. It was one, “said Kate.

Currently, Kate’s only option is to raise the funds needed for life-changing surgery. She is already selling her car and is ready to get rid of her wedding ring.

“I want to fix my brain rather than putting a diamond in my hand,” she admitted.

Two weeks ago, she set up a GoFundMe page in the hope that the public would be generous enough to donate to her purpose.

The total was boosted by actor Michael Sheen, who donated £ 1,000.

“I used to work for Women’s Aid in Port Talbot, but he’s now their ambassador. One of my old colleagues suggested I contact him,” she recalls. Talbot.

“I literally tweeted him, explained what I was experiencing and asked to retweet me. I didn’t expect him to donate so much money, congratulate him . He is a Welsh hero. “

Kate, who works for Swansea’s private clinical trials company, has been unable to work for the past 18 months due to her condition.

“I manage clinical trials and help patients like me get the data they need to support new treatments,” she said.

“And I’m in a position to professionally prevent it. It’s a rare disease that the NHS isn’t aware of and requires new treatment.

“I want to go back to work and continue my medical career.”

Click to donate to Kate’s fundraising activities Here..