SHANNON MAN Kieran McCarthy will be on the start line for this year’s Dublin City Marathon with 12,000 other odd runners having not slept the night before.

The 32 year old is not participating in some sleep deprivation experiment for amateur athletes but is running the marathon as part of an intimidating endurance challenge.

One hour prior to the start gun in the marathon, Kieran is scheduled to arrive in Dublin after cycling 230km throughout the night from his Co Clare home town.

The challenge starts in Shannon at 7.30pm the previous night when he swims 120 lengths of his local pool to complete a 3km swim.

His wife, Sinéad, recalls the moment before last year’s Dublin City Marathon when he told her what he had in mind.

“Kieran just said, ‘I think I might cycle up next year before the marathon and then run it’. I just thought, ‘Of course, dear’, but the next time he said it a few weeks later I knew he was dead serious, and I thought, ‘Do you know what? He is actually going to do this’.”

Kieran’s motivation in mounting what he calls the “TLC Crusade” is his three-year-old daughter Aoibheann, who was diagnosed with cystic fibrosis (CF) just over 16 months ago.

Sinéad says: “Kieran has always been determined, but Aoibheann’s diagnosis made him even more so. He is doing this for her and her future.”

Sinéad remembers what she calls the “total heartache” when told by a doctor of Aoibheann’s diagnosis.

“I was scared mostly for her and what she would have to go through. It never goes away, she will have to live with her condition every day, and I wondered how she would cope with that especially as she gets older. But so far she is doing great.

Kieran recalls: “I couldn’t believe what I was hearing. It was like a big wave had just hit me and I was trying to steady myself, I felt so many things at once but the biggest thing was fear.

“Fear of what might happen Aoibheann, fear of what we were going to be told next, fear of what lay ahead. The fear never goes away, but you have to put it to one side and focus on the present, let tomorrow worry about itself.”

Kieran advises other parents in a similar position “to stay away from the internet until you speak to your CF team in the hospital or your child’s doctor. Without knowing the facts about your specific child, it will only scare you.”

Sinéad says: “The only way to cope with something like this is to get on with your life, do everything you had intended on doing as you intended to do it and fit the CF into the picture, don’t let it be the focus.

“All the dreams that I had for Aoibheann when we first had her are still there – we may need to go about things a bit differently, that’s all.”

About one in 19 people are carriers of the cystic fibrosis gene and where two carriers parent a child together, there is a one in four chance of the baby being born with CF.

While much of the focus for patients’ facilities has been on those for CF patients in Dublin, an €11 million medical centre is currently being constructed at the Midwestern Hospital in Limerick that will contain a new dedicated nine-bed unit for young adult CF patients in the midwest to allow a continuation of service for child CF patients.

Sinéad says: “We are very lucky to have the facilities that we have in Limerick for children with CF. The CF team there is fantastic.”

However, the worry is for Aoibheann when she gets older, as the facilities in the midwest for adults for CF are, according to Sinéad, “very basic”.

She says: “The number of adult CF patients attending Limerick Regional is increasing all the time as people living with CF are surviving longer, which is why the work of TLC4CF is so important.”

The chief executive of Cystic Fibrosis of Ireland, Philip Watt, has described the new centre as “a beacon of hope” for young adults with CF in the midwest.

Until now, the regional hospital has had only three dedicated CF beds for adults and, according to the planning documents, they “are located on medical wards, without isolation facilities, which presents a very real threat of cross infection”.

Funding for the new centre is being raised by the regional-based TLC4CF campaign and monies raised from Kieran’s TLC challenge will go towards the fund and towards the Clare Crusaders’ charity that provides a range of therapies to Aoibheann. He says: “The Clare Crusaders clinic has been a tremendous help for Aoibheann.”

Sinéad says: “With the development of this new unit, all CF patients in the midwest region won’t have to endure the dangerous and inadequate services that previously existed.

“People with CF fight every day against their condition and keep on going, we need to help them in their fight by giving them a chance to get the treatment that they need, the best possible treatment available without fearing cross infection.”

Kieran believes the new centre – due to be completed next year – “will have a hugely positive impact on our CF population. Now young adults will be in a position to have a continuation of care when they transfer to the adult facilities.”

On the future, Sinéad says: “There are developments in the area of CF treatment that are very encouraging, and give us all great hope for the future. Improved facilities mean that there will be more patients surviving to take advantage of these treatments that could lengthen their lives.”

With Kieran now ramping up his training schedule over the next number of weeks as the TLC Crusade event looms, Sinéad says: “I am nervous already about the TLC Crusade.

“I am in no doubt that he can and will do it, but my heart will be in my mouth until I see him near the finish line in Dublin. There will be tears of pride and relief.”

She smiles and says: “I couldn’t tell you what Aoibheann will make of it. I am hoping that this year will be the year she manages to stay awake to watch Kieran cross the line in Dublin.”