Cork father of three 'went from going for short walks to not being able to stand' 

Bryan and Charlotte with Jesse, Ty and Elle. Picture: Michaela Dunlop

Bryan O’Brien acknowledges the cruel irony of watching his baby son take his first steps as motor neurone disease (MND) robs him of his own mobility.

It comes as his community rallies around the 41-year-old father of three following a rare and accelerated form of the illness which, in the space of only six weeks, has left him in a wheelchair. 

He has thanked contributors to a GoFundMe account that has generated more than €85,000 to date for advanced medical treatment in the US, assistive technology and home adaptations, and other costly expenses. The public’s generosity came as a welcome distraction at a painful time for Bryan and his wife Charlotte, who live in Carrigaline, Co Cork.

They have been juggling raising their children — Elle, 6, Jesse, 3, and Ty, 11 months — with adapting to the earth-shattering diagnosis.

Bryan with his children Elle and Jesse.

“I have a very dry humour against myself here when I say that my son is becoming more mobile than me,” Bryan told the Irish Examiner.

“He is only crawling three weeks and now he is standing and taking his first steps. You can see him getting bigger by the day. I look at him standing and think ‘this is great’, and then I remember I can’t stand anymore. However, it’s still amazing to see and to watch him on that journey.”

He explains how the nightmare began.

“I had my first initial symptoms around October, with what I initially believed was just back pain. I was walking my daughter to school after she started junior infants when I noticed that after 20 yards I was starting to deviate into a sideways walk.”

A physiotherapist referred Bryan to a GP, who organised an MRI.

“The doctors said from the beginning that MND was in the background, but wasn’t likely because the symptoms had come on so fast. We kind of had our hopes up that it wasn’t MND. So when this hit the family, it was pretty ugly and pretty shocking. Charlotte has been an amazing support to me through it all.”

Bryan with his children Elle, 6, and 11-month-old Ty.

Bryan said his children were too young to grasp the reality of his illness.

“Jesse says that, for his birthday, he wants me to bring him to Little Kickers [a pre-school soccer camp] and rugby again. When it comes to MND, I’m a very practical person, but hearing these things is probably the hardest part. It usually takes a few years for people with an illness to become disabled. In six weeks, I went from going for short walks to not being able to stand and being in a wheelchair full time.”

The devoted family man spoke about how much the community’s support and GoFundMe donations meant to him.

“It has restored my faith in humanity. There is so much negativity in the world. There are so many wars and bad things happening that it made me question humanity in general. Then there were the strangers, the people I don’t even know, donating to this fund. They want me to have as much time as I can with my young family and that’s all I want. 

I think I cried more when I saw the reaction to the GoFundMe than I did after my diagnosis, only these were happy tears.

Bryan said he wanted to be able to participate in his children’s lives for as long as possible.

“They are very happy kids who love fun. Even last night, Elle was running around and screaming with excitement after hearing she was going to Rumley’s Farm for her school tour. She is most excited about going on the bus. Before that, she had no idea what a school tour even was. I was really glad to be there for that moment.”

He listed the possibilities for how assistive technology might change his life.

“I’m looking at technology like smart glasses or robotic gloves so I can continue to try to eat. The hope is to really push the boundaries to find out what’s out there — not just in Ireland, but globally too.

“It might sound funny and like a really small thing but having the ‘Are you still watching?’ text come up on the screen on Netflix while Charlotte is out and not being able to do anything about it is something I think about a lot. Being stuck there looking at a blank screen would be very difficult for me psychologically. I’d like to be able to get in contact with people who might be able to solve problems like these that may seem small but could make a big difference.”

The Cork man derives hope from stories of other MND sufferers.

“I’ve heard about people who were initially very quick to degrade but then fully plateaued. Stories like this really give you hope.”

To donate to Bryan’s GoFundMe visit gofundme.com.