Fundraising is underway to pay for advanced treatment for a Cork father of three who was diagnosed with a rare form of Motor Neurone Disease (MND) after going to the doctor with what he believed was a back injury.
Bryan 'Bob' O'Brien has been overwhelmed by the support he has received since his diagnosis.
Efforts are being made to raise €500,000 for advanced medical treatment for Bryan (41) in the US.
It will also pay for the conversion of his home to an accessibility-friendly status.
Bryan lives in Carrigaline with his wife Charlotte and their three young children — Elle (6), Jesse (3), and Ty (11 months).
The young father said he was initially frightened by his diagnosis.
“I was diagnosed after undergoing tests for what seemed like an innocent back injury late last year," 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. The speed and intensity of my symptoms surprised my neurologists, doctors and nurses from day one."
Bryan was rocked by the fact that his form of MND is quite rare and fast-acting.
“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 stressed that he has coped with his diagnosis thanks to the incredible strength shown by his family.
“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.”
Friends have already raised almost €70,000 of their €500,000 target.
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.
Charlotte said they have been overwhelmed by the support and kindness of the community.
"This fundraiser means everything to us. It is about securing Bryan's future, ensuring he has every possible chance to fight this disease with dignity and hope," she said.
"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."
Some of the funds raised will be used for essential home modifications to accommodate Bryan's changing mobility and explore cutting-edge medical treatments.
He is also 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 neurons 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 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.
