‘Nothing would have prepared me for what I was facing,’ says mother of five diagnosed with motor neurone disease aged 41

Carol Liston O’Connor (42) was a secondary school teacher before her diagnosis in November 2022.

She started noticing a series of symptoms, such as poor balance and tiredness, which gradually progressed for two years before her diagnosis.

“I was falling, banging into things, tiredness and weakness were just chronic,” she said.

“I couldn’t lift my two-year-old twins off the floor, I’d had to sit in the chair and get them to climb on me.

“My balance was affected, and my walk, and I just knew I wasn’t right.”

Ms O’Connor made an appointment with her GP in October 2022.

“It all took off from there,” she said.

When she eventually received the diagnosis of motor neurone disease, she was left in a state of “complete shock”.

“It’s associated with men in their late 50s and 60s, that’s the way it was known before. Whereas an awful lot more young people are now being diagnosed. Nothing would have prepared me for what I was facing,” she said.

Ms O’Connor and her husband Liam have five children: Ellie Mai (11); Molly (9); Liam Óg (7) and twins Mikie and Paddy (4), who have been supporting their mother since her diagnosis.

“My children are the reason I get up in the morning,” she said.

“Life is just very different now for me as a mum. I try to do as much as I can with them every day, but being here is the most important thing.

“Being able to listen to them, talk to them and go through their worries and questions.”

Her diagnosis has changed her family’s life but she said the children have been “so adaptable”.

“They’re just an amazing bunch of kids, the way life has obviously changed for them too. I call them my VIPs – my very important people,” she said.

The Limerick native had followed Charlie Bird’s campaign to raise awareness about motor neurone disease, for a long time before she knew she had the same condition. She said she is proud of Bird for taking a stand against the condition and said his campaigning helps families like hers.

“Now knowing [about my condition], I’m very pleased that someone of his calibre and profile has highlighted it and has raised so much money that goes directly to the likes of me and my family. He’s a great man,” she said.

Ms O’Connor tries to stay positive, which is an important thing to maintain when battling the condition, she said.

“When you’re diagnosed initially, your whole world comes in around you, but we still have tomorrow to get up and go again,” she said.

“And my advice would be to remain strong in your head and have a positive outlook because you never know what tomorrow will bring.”

Carol is appealing to the public to listen to their bodies more and said: “don’t ignore things”.

“Had I known 12 months earlier, there’s a lot more I probably would have done with my kids in those 12 months that I could have done but now I can’t,” she said.

Carol's friends have started a fundraiser for her treatment in the US and to adapt her house to her needs, which has already raised €120,000 since its launch on February 9.

The GoFundMe fundraiser is available here.