'Every single added day with them is precious'

A Cork community is rallying behind a young father of three who was recently diagnosed with an aggressive form of motor neurone disease (MND).

Bryan O’Brien, 41, lives in Carrigaline with his wife Charlotte and their three young children Elle (6), Jesse (3), and Ty (11 months).

Following Bryan’s MND diagnosis in February, friends of the family set up a GoFudMe campaign which has already raised over €60k of its €500k target.

All funds raised will be used for essential modifications to accommodate Bryan's changing mobility and to explore cutting-edge medical treatments overseas. Bryan, known as Bob to his friends and family, is actively seeking out clinical trials in the USA that are not available to him in Ireland or Europe, in the hope of slowing down the progression of the aggressive disease.

Since his diagnosis, Bryan has already faced significant challenges to his quality of life.

“I was diagnosed after undergoing tests for what seemed like an innocent back injury,” he said.

“I kept hearing words like rare and accelerated, which was quite scary.

“At first, no one knew what it was, and new symptoms kept appearing rapidly,” added Bryan.

MND is an incurable, life-limiting neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching the muscles, which leads to progressive wasting, weakness, and paralysis. The cause of MND is not known.

Bryan continued: “Sometimes stories are more powerful than any diagnostic or scientific test outcome.

“I've now become aware of other MND patients who presented like me initially with a rapid burst of symptom onset and then plateaued suddenly.

“Every day presents its challenges, but these tangible positive stories have compelled me to push forward now.

“My motivation is my wife, Charlotte, and our three beautiful children, Elle, Jesse, and Ty. They're my driving force, my reason to keep going. Every single added day with them is precious,” he added.

Funds raised will also allow Bryan to access cutting-edge assistive technologies for people suffering from paralysis such as robotic assistive gloves and advanced AI speech support. Bryan plans to collate information to make it available to others.

Speaking on the fundraiser, Bryan’s wife Charlotte said: "This fundraiser means everything to us. It's about securing Bryan's future, ensuring he has every possible chance to fight this disease with dignity and hope. Every donation, every gesture of support, is a lifeline for our young family. This is a situation we never envisioned finding ourselves in.”

Bryan and Charlotte have pledged any remaining funds from the fundraiser to support research and development efforts to find a cure for this debilitating disease.

To make a donation, see the GoFundMe page at gofundme.com/our-buddy-bryan.