A mother-of-three, who had been fit and healthy, has been left with severe upper body disabilities after being diagnosed with a rare syndrome.
“Our lives just stopped”, said her partner when Katie Compton was told she had Guillain-Barré syndrome (GBS), a rare and serious condition which affects the nerves in the body.
At the beginning of 2023, the 43-year-old rang her doctors about a cough that had persisted after a bad cold. She was prescribed antibiotics but the next morning, she woke up with a slur in her speech.
Ms Compton went to A&E and was admitted to Queen Elizabeth Hospital in Kings Lynn for what doctors believed to be anaphylactic shock.
By the next day, she had swollen so much she couldn’t swallow, and the decision was made to intubate her. It wasn’t long before She was placed in a medicated coma.
Her doctors tried to bring her round three days later with no success. Another three days passed, with no response.
Her partner David Jones said: “Katie’s sister Claire and I soon noticed that she was moving her big toe when we asked her a question. It turns out that she was awake – she just couldn’t move.”
Doctors confirmed she was no longer in a coma and eventually came to the diagnosis of GBS.
Mr Jones said the road to recovery was long, remembering: “She was having seizures, she had two cases of pneumonia, and a bout of sepsis. Eventually they got her to the point where she could talk again because before that we were using a letterboard to communicate after a tracheostomy.”
Ms Compton has had to learn how to walk, talk, eat and even breathe properly again.
After four months at the Queen Elizabeth Hospital, she was moved to a rehabilitation centre in Norwich. She has since come home but with severe upper body disabilities, and limited use elsewhere.
Mr Jones said the family has struggled with the impact of her condition: “Our lives changed overnight. We went from being a normal family getting on with life but then everything stopped – It’s stopped for everyone.”
Ms Compton’s sister Claire added that the last year has had a “massive impact”.
She said: “I’ve had to take on the role of being another mum to her children. Whether it’s washing, buying them clothes or taking them to appointments, whatever they needed their mum to do for them on a normal day.
“I took five months out of work to be at the hospital with Kate. We also have elderly parents, my own son was doing his GCSEs. We were all struggling but so were the children. It’s a long time to be without your mum.”
She said there is a lack of awareness around GBS: “It can happen to anyone and it completely destroys their life, and everyone else’s around them. I haven’t got my sister back completely. She’s alive but she’s changed.”
The family are now fundraising to make their home more accessible for her, including converting a bathroom into a wet room and making their garden wheelchair friendly. Their GoFundMe has currently raised over £2,000 of their £4,000 target, at over 100 donations.
Mr Jones said being able to get the work started has been a weight off their minds: “I’m able to cope with a lot more of the personal care for Katie rather than relying on strangers to wash her and shower her. It gives her more of her dignity and independence back which is a big thing for both of us.
“Even those who haven’t got the money to give, and I know it’s a difficult time for everyone, for them to have shared it, I’m really grateful.”
Mr Jones agrees that it is important to raise awareness about GBS: “It’s a horrible thing. Until you’ve got someone close to you that’s got it, you don’t realise quite how aggressive your own body can be to yourself.
“Unfortunately, it doesn’t get the publicity, or funding, or recognition that other diseases get. It presents very similarly to a stroke and there is little treatment for it or recognition.”
