‘It started off as one dead leg’ – Woman taking part in VHI Mini Marathon to raise awareness of motor neurone disease

Emma Bonass (26) will take part for her dad Noel (61), while raising money for the Irish Motor Neurone Disease Association (IMNDA), who she said have been “brilliant” in their support for the family, providing equipment, wheelchairs and voice technology.

She said it has been difficult to come to terms with as a family, from her father’s diagnosis to reaching the “very advanced stages” of the disease in the space of a year.

“It started off for dad as one dead leg and it spread throughout his whole body. His voice is gone now, his swallow is starting to go and his breathing is very weak. It was very quick for dad,” she said.

Originally from Ballyfermot in Dublin, he met his wife Marie in the civil service, where they both worked their whole lives before his retirement last October. They raised Emma and her younger brothers in Maynooth, Co Kildare.

“There is no way to predict MND, it’s literally just taking it day by day and dealing with what’s happening at this very moment instead of thinking about what is to come,” she said.

“You are learning about it as you go. You know what is going to happen but I find myself not really thinking about that. I’m just coming to terms with his voice being gone, or him not walking. It’s really hard to explain to people.

“People are like, ‘I don’t know how you’re not shut off from the world. I don’t know how you go about your daily life.’ And I definitely think you’re in autopilot the entire time.

“You have your bad days but it has made us more aware of the good days and taking advantage of them and spending time with each other and also asking questions that we didn’t know about Dad to know him more.”

She said her father was young, fit and healthy, describing going out for a run as his “happy place” when he experienced his first symptoms and received a diagnosis for MND in the weeks following his milestone birthday.

Ms Bonass will run the Mini Marathon with friends on Sunday and will return home that evening for a post-race debrief with her father, like he did for his own races.

“It’s something he loved to do, that pushed me to do this. I am able to do it, I am able to do it for him and I’m lucky enough to be able to run so I should do it for him,” she said.

“That’s something that he has with him, to know this is something that I did for him.

“I’m doing it for him and the IMNDA, something that a lot of people with motor neurone disease can’t do anymore and it’s taken away from them within a matter of days.”

She described herself as someone who used always look ahead at her plans for the future, but it is difficult now to think about what her father will not see.

“I’m so grateful that I have this time with dad and can cherish every moment, but it is very hard at the same time thinking about the future and thinking about as time goes on, if we have kids or get married that dad most likely won’t be there,” she said.

“You don’t really focus on the future anymore. I was somebody who always used to focus on the future, I used to constantly think about where I would be in five years, in ten years, but now it is day by day because with this and they way things have gone, the odds are not in our favour.

“I still have hopefully my whole life ahead of me and that’s the hardest thing, what dad won’t see. I’m 26, my brother is 23 and my youngest brother is 19 so he was just doing his Leaving Cert as we found out that dad had MND, so we all have our whole lives ahead of us.

“None of us have kids, none of us are married yet. That’s to come and that’s something we want. These are things that dad won’t see, but I did have a conversation with him. I was like, ‘I just feel sad for the things that you won’t see in life’ and he said, ‘But I have seen so much.’

“And that’s what we need to take, dad saw us grow up into our adult lives and his biggest wish would obviously be to see that and enjoy himself and enjoy his retirement – and then obviously, that’s completely taken away.

“I’m holding onto that sentence. He said, ‘I’ve seen so much.’ That gives me joy, that he has seen his kids grow up and knows they’re okay and are happy with where they are in their life and that we have my mom as well.”