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“I was diagnosed after undergoing tests for what seemed like an innocent back injury late last year”
A fundraising page has been set up for Bryan O’Brien, a Cork father-of-three battling Motor Neurone Disease (MND).
The Go Fund Me page —gofundme.com/our-buddy-bryan — was created by friends of the 41-year-old after he was recently diagnosed with an aggressive form of the disease. Bryan lives in Carrigaline with his wife Charlotte and their three young children — Elle (6), Jesse (3), and Ty (11 months).
In the past week, over €80,000 has been raised of a €500,000 donation target, which will be used for essential modifications to accommodate Bryan’s changing mobility and explore cutting-edge medical treatments.
Bryan — known as Bob to his friends and family — is actively seeking out USA clinical trials that are not available to him in Ireland and Europe, in the hope of slowing down the progression of this aggressive disease. Since his diagnosis at the end of February this year, Bryan has already faced significant challenges to his quality of life.
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.
Speaking on his diagnosis of a viciously aggressive form of MND, Bryan said: “I was diagnosed after undergoing tests for what seemed like an innocent back injury late last year. 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. The speed and intensity of my symptoms surprised my neurologists, doctors and nurses from day one.
“However, 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. Some are still living over a decade later. Fully paralysed, and needing significant care, but most importantly alive.”
Bryan added: “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.”
In addition to assisting Bryan to undergo treatment in the USA, funds raised will allow him access to cutting-edge assistive technologies for people suffering from paralysis. Bryan has made a call out to engineers and tech companies to share details on available and upcoming innovative solutions, such as robotic assistive gloves and advanced AI speech support. These technologies will improve his, and other people with neurological disabilities, daily lives. Bryan plans to collate information to make it available to others.
Speaking on the fundraiser, his wife Charlotte added: “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. But we are and this campaign is invaluable. This is our reality, our battle, and we need this — for Bryan, for our children, for our family’s future.”
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.
For more information, see the Go Fund Me page at gofundme.com/our-buddy-bryan.