Rallying cry for Cork teacher and mum-of three, 41, diagnosed with MND

When Mark Smith met Mitchelstown woman Claire Downey, he says “it was love at first sight”.

They met in Edinburgh in 2005, when Claire was travelling after finishing university. “For 10 months, we travelled back and forward to see each other,” says Welshman Mark.

They moved to Mitchelstown in 2006. Claire was the one. The one Mark would marry and who would become mother to his three children, Fionn, nine, Aoibheann, eight, and Odhrán, four.

“I knew she was ‘the one’ within a week of meeting her,” says Mark. “We got married on an idyllic day in 2011 at the Garryvoe Hotel.

“We were so happy together with our three children here in our home and living among our close-knit community, surrounded by family.”

However, their happy life was upended in March this year.

At 41, Claire, who is a secondary school teacher, was diagnosed with motor neurone disease (MND).

“As you can imagine, receiving this news has been absolutely devastating for a vibrant, active young woman like Claire working in her local community and enjoying raising our family,” says Mark.

“The timeline of Claire’s disease is completely unknown.”

Things changed almost overnight.

“Claire was living a completely normal life, but the rapid progression of this disease has now rendered her dependent on a wheelchair and rollator, limiting her mobility to the extent where she can no longer move around our house independently or travel with the children to them at activities,” says Mark.

How did the onset of MND come about for Claire?

“It started as a simple foot pain not long after our son’s communion in May, 2024,” says Mark. “The pain spread up to her hip and down her leg.”

It was suggested that Claire had bursitis, a painful swelling of the fluid-filled sacs that cushion spaces between bones, muscles and other tissue inside your body.

However, Mark says: “During the summer her pain got progressively worse, even though she went to the physiotherapist for treatment.”

Claire went back to her GP in October now needing two crutches to get around and to continue her teaching job at Mitchelstown’s Coláiste Fionnchua,.

“He sent Claire for tests to the Bons where she had a lumber puncture and brain scans,” says Mark.

“It was becoming clear that the pain was neurological. There was no conclusive diagnosis. Lots of tests, including blood tests and hereditary testing were carried out. They were all clear.”

Claire’s health issues continued.

“We were praying for a solution,” says Mark.

No stone was left unturned.

“Claire even had a section of her thyroid removed in February to try and give her some pain relief,” says Mark.

In March, she was referred to Beaumont Hospital in Dublin by her GP. “A lovely doctor was able to diagnose motor neurone disease,” says Mark. “He confirmed it.”

That day is etched in Mark’s memory. “I it as if it were yesterday. We were in tears all the way down, it was the worst diagnosis we could have received.

“The hardest thing was not knowing what could have caused this awful condition,” says Mark. “We had no way of knowing. If we did, it would have given us some relief.

“A lot of older males get diagnosed with MND. For a female of 41 to get MND, it is very rare. That made it harder for us as a family to take.”

The bright future the Smiths had always envisaged was threatened.

“It took a few weeks for it to sink it,” says Mark. “There were a lot of tears. How do you tell the kids mum is sick and won’t get better? It was very tough on Claire. We were thrown sideways.”

There was a lot of .

“The from our family, our friends, our schools where we teach, and our community in Mitchelstown, is overwhelming,” says Mark.

“The local GAA where I coach the girls’ club, have been brilliant. They set up an iDonate link, ‘Caring for Claire’.

The Yard Bar in Mitchelstown had a fundraiser and Ballygiblin GAA held a golf classic for Claire last weekend. A coffee morning in the nearby Kilbehenny community raised more than €6,000.

There are also more fund-raising events planned in the coming weeks - a barbecue/music night in Dan Casey's pub in Kilbehenny on Saturday, June 7, and a breakfast event at Anglesboro Community Centre, Co. Limerick, on Sunday, June 8.

What is life like today for the happy couple who fell in love with each other at first sight?

“Claire’s disease is progressing rapidly,” says Mark. “She is co-dependent on me.

“She is only able to move with the help of either a rollator walker or a motorised wheelchair. She has had to take a step back from looking after her children and doing activities with them.

“We love the outdoors, we always loved going on getaways to Dingle and enjoying the beauty of nature. As a family, we enjoyed going to shows.”

Claire Downey Smith is a strong woman.

“She is the strongest woman I know,” says Mark. “She still works when she can, even though that is less and less. I don’t know how. She is incredibly brave.”

So is he.

“I will always be here no matter what,” says Mark.

Everyone that knows Claire is there for her. The family are well known in the wider Mitchelstown community and locals have been tirelessly fundraising for Claire since her diagnosis.

“We need to do a house extension with a wet room,” says Mark. “The playroom will be turned into a bedroom for Claire. We must get ramps put in and bannisters to give her as much independence as possible.”

Claire is resilient.

“She’s not going to give in,” says Mark. “She has three kids to live for. She wants to be here for as long as she can.

“Obviously, coping with the progressive disease is mentally tough for her. We are still dealing with the unknown. There was never a plan for this.”

They do know they have another lovely family occasion happening next year.

“We have another First Holy Communion,” says Mark.

He worries that there won’t be too many more family occasions for him and Claire to embrace.

“We don’t know what the future holds,” says Mark. “It could be one year, five years, 15 years. We don’t know the rate of decrease in mobility and cognitive skills.”

Mark is certain of something.

“When I met Claire, it was love at first sight. I knew this was different than before. I took a chance. I knew Claire was loved by her family. I love Claire’s family loyalty. She has a big heart and puts everyone else first. I have never heard a negative word said against her.”

Claire loved her job too

“Claire loved teaching,” says Mark. “She can’t do science experiments at school anymore, which is a source of sadness to her. Our day-to day life is hugely changed.

“Activities for us are restricted now. Claire finds that hard. When we get an adapted car, we can all go out together again.”

They are all in it together.

“We are blown away by the we are getting,” says Mark. “It gives you a bit of strength, even when people don’t know what to say to you. Only for the , I think I might have crumbled.”

Mark is a source of strength to his wife and their children.

“Claire is an amazing person,” says Mark.

So is he, caring for Claire.

“It is hard to see the love of your life incapacitated,” says Mark.

“Claire is determined to live the best life she can.

“She is taking every opportunity to make memories for the kids. I am doing the same.”

An iDonate campaign set up on the Smiths’ behalf has already raised in excess of €60,000 to them.

All money will go towards upgrading Claire’s home to make it wheelchair-accessible and for purchasing an adapted car so she can travel to activities with her children.

To Mark, email [email protected]