Mum’s very rare brain condition started as slurred speech and left her bed-bound aged 51

A Coleraine man is on a mission to raise awareness for a very rare brain disease which has left his mother bedbound.

Ethan Downey’s 51-year-old mum, Joanne, was diagnosed with Corticobasal Degeneration (CBD), a rare and progressive neurodegenerative disorder.

Speaking about the condition, Ethan said the diagnosis has been a huge shock for the family. He explained that symptoms first began to appear in 2022, including cognitive issues and slurred speech.

While the condition initially appeared to stabilise, her health declined after she was referred to a neurologist in December 2024. Ethan is now spreading awareness about the condition and raising money for the PSP Association as he takes on the Belfast City Marathon on May 3. The 20-year-old has been training hard and launched a campaign on GoFundMe.

Ethan said, “It has been a shock to everyone. Since 2022, my mum Joanne has been showing symptoms of it, cognitive issues and some slurred speech. It appeared stagnant for a few years, but in December 2024, she was referred to a neurologist, and now it has culminated in her being bedbound.

“It has been difficult for the family seeing this progress so quickly. Even the doctors aren’t fully aware of the stages of what is happening, it can be a bit confusing sometimes to know where we are with it. Our faith in Jesus has helped us tremendously during these difficult times.

“The whole goal behind running the marathon is to raise money and awareness for CBD. It is a degenerative disease where the brain shuts down, and it is a very rare condition, especially in the UK. I am looking to help in any way I can, and to help raise money for research. Hopefully, it will help other people who are diagnosed in the future.

“I’ve always played football growing up, so it has kept me football fit, but alongside that, I’ve done maybe some five km. Since about November I have been increasing the distance, using different apps and creating running programmes.“I have been progressing in my distances and I have enjoyed it so far. The fact I am doing it for my mum has helped me get through it. The longer runs are starting to come in now. This will be my first full marathon. I’ve done a few half-marathon distances before, but this will be something different.“I am raising money for the PSP Association, they support people with the condition and help better their lives. They also help with research. They also raise awareness on something that tends to go under the radar and sometimes gets misdiagnosed.”

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