Pedal power for CF

As TLC4CF gear up for a fundraising cycle this weekend, Seamus Clancy tells Peter O’Connell how inspiration isn’t hard to find

TWO years ago, almost to the day, TLC4CF was launched. The group, formed by the Clare, Limerick and Tipperary branches of the Cystic Fibrosis Association of Ireland, had a target in mind. They needed to raise €4.2m to fund the construction of a specialist CF unit on the grounds of the Mid-Western Regional Hospital in Limerick. Two years later, they are just €1m short of what must have seemed like an initially overwhelming figure.
That target will be further eroded on Saturday but not without the spillage of some sweat on the scenic roads of North Clare. Three cycles, catering for pedallers of all hues, will leave Kilnaboy NS at 10am. Anybody who hands over the entry fee can chose to cycle 115km, 40km or just 10km, which is aimed at families. The long route will take in most North Clare villages and towns including Kilfenora, Ennistymon, Lahinch, Liscannor, Doolin, Fanore and Ballyvaughan. 
Seamus Clancy will be putting his pedal to the North Clare floor for personal reasons. His 13-year-old son Cillian has cystic fibrosis but doesn’t use his condition as an excuse not to live a full life. It’s an attitude that has inspired Seamus, whose wife Marcella is one of five people on the steering committee of TLC4CF.
“The sport is great for him,” Seamus, who was corner-back on Clare’s 1992 Munster Championship winning team, says of Cillian’s love of football and hurling. “This man is going to play for Clare. That’s his mentality. This fella is an inspiration to me. Everything he takes on is with 100% effort.”
“The day of a match, at 8am, first thing – it’s the match. Long may that continue. I remember Corofin were playing an U-12 final last year, I couldn’t see him anywhere. He wasn’t feeling the best but here he was banging himself into the chest to clear up his lungs so that he’d be a little bit better,” Seamus recalled.
Pulling on the red and white of Corofin indicates Cillian’s willingness to give his all for his club but it also has a beneficial effort in helping him to deal with CF. 
“He has that fighting spirit and he’ll need it as time goes on. I hope he never loses it. Plus, all the training is building up his lungs and keeping his lung function high,” Seamus said.
Taking on the responsibility of fundraising more than €4m was a mammoth task and still is, even if significant inroads have been made. Seamus is adamant however that parents of children with CF have little option but to toil for better facilities in the Mid-West.
“If you have a child with CF and if anything happens to them, you don’t want to be in a position where you’re saying, ‘why didn’t I do this?’ So even though you are under a lot of stress and a lot of pressure, you know that you have no choice but to raise funds. If we can get this hospital built and it will be built now, we know that, in our own case with Cillian, it’s going to make his life better. It’s as simple as that,” he explained.
Every cent raised from Saturday’s cycles and from other events is put towards the CF unit fund.
“It’s all fundraised for. There was nothing from government. Funds raised go directly into the project. There’s nobody getting a wage or there’s no cost. Everything is done voluntarily,” he added.
Construction on the CF unit in Limerick is due to start next month. “There will be five outpatient and nine inpatient beds. There will be six floors in it and it’s located at the back of the regional hospital. The hospital trust gave the site. We had to meet the then health minister Mary Harney to make sure that if it was built that the HSE would staff it. They have guaranteed that they will staff it,” Seamus revealed.
Seamus recalls when he and Marcella brought Cillian to the Children’s Hospital in Crumlin on one occasion when they had a lengthy wait, while people around them were coughing and spluttering.
“We were saying ‘what will we do?’ Eventually we were put into a store room to wait for a specialist. You go up there, Cillian is well but is he going to come back having picked up something in a hospital? You would be worried. We feel that if we can get this done and finished, that you can take a break then. But we need about another €1m,” he reiterated.
When a child with CF reaches 16 in Clare, Limerick or Tipperary, they are considered an adult and have to be treated in Dublin. This, in Seamus Clancy’s view, accelerates the need for a CF unit in Limerick.
“You have a doctor up to 16 that knew everything about you and all of a sudden they can’t cater for any adults and you are gone to another doctor who doesn’t know anything about you. And it’s at a critical time,” he noted, adding that CF treatment facilities in Dublin are often already over-crowded.
The task on Saturday is to crowd the roads of North Clare with cyclists, be they experienced or barely able to cycle a straight line.
“If you can cycle 60 or 70km, you will do the long cycle no bother. There are a lot of local people who are training for it and they’re well up now. If you have a bike and if you have time, you’ll cycle 40km at your own pace. You can take as many breaks as you like. If it takes you three hours even, you can rest and stop and take in the scenery,” Seamus suggested. There is also the 10km option for families with young children.
He maintains that without the help of people in Kilnaboy, organising this event would be impossible.
“The local people have been brilliant as regards marshals and organising food. They just couldn’t do enough. Kilnaboy is a great community,” he believes. 
Any voluntary group tasked with raising more than €4m would be entitled to talk a few gulps but Seamus Clancy says the group involved just had to attack the project. Nobody was going to build the CF unit for them.
“You have to do it yourself. We could have been fighting with the government for ten years and still be sitting here and there would be nothing done,” he said.
He doesn’t begrudge a minute of the thousands of hours donated to the cause.  “We’ve got the inspiration from the children. Anyone with a sick child will tell you that. They inspire you. What they have to fight every day, they fight it because there’s no one going to fight for them,” he reflects.
“That’s the same mentality with the fundraising. If this is to be done, you have to do it. When you start something then like that, people row in. You’d be surprised how the things kicks off. If you were to look at raising €4.2m, it looks impossible but then you start and you raise €1,000, it’s one thousand less you don’t have to raise,” Seamus surmised.
Anybody who can take part on Saturday can register from 8.30am at Kilnaboy National School. All cyclists must wear a helmet and those needing to rent a bike can contact Seamus Clancy on 087 8222750 for information. Further information on the fundraising committee is available on tlc4cf.com.