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'Research is giving us hope for Alex's future'

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Ian and Julie O'Herlihy are determined that their lively two-year-old son Alex will live as normal a life as possible despite the fact that he has Cystic Fibrosis

Ian and Julie O'Herlihy are determined that their lively two-year-old son Alex will live as normal a life as possible despite the fact that he has Cystic Fibrosis

Proud parents Ian and Julie O’Herlihy, with their young son Alex

Proud parents Ian and Julie O’Herlihy, with their young son Alex

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Ian and Julie O'Herlihy are determined that their lively two-year-old son Alex will live as normal a life as possible despite the fact that he has Cystic Fibrosis

IN 2011, Ian and Julie O'Herlihy from Rathfarnham, Co Dublin, were looking forward to having their first baby. At 21 weeks, they went for what they thought would be a routine scan.

"We were sitting there, taking bets on whether it would be a boy or a girl," says Ian. "The midwife was scanning and then she went quiet and called the consultant. They came back in and said there were markers for Downs Syndrome and other syndromes, which were incompatible with life.

"Downs was our best case scenario at that point. We did an amniocentesis to test. It took about a week for the results to come back and it was mixed news in that we were told it wasn't any of the syndromes but it was Cystic Fibrosis."

At that point, Ian and Julie were referred to Crumlin Hospital, where they met with a team to discuss the care of their then unborn son.

"The first thing you do when you find out something like this is google it. We didn't have any real knowledge about the seriousness of Cystic Fibrosis or what it entailed.

"The first thing you see is life expectancy. The median age of death is 25. That was a scary thought."

The medical team in Crumlin prepared them for what to expect when Alex was born, what physiotherapy he would need, what medication he would be on.

Kids with Cystic Fibrosis (CF) can't mix because of the risk of cross infection but Ian and Julie have found internet groups and lists populated by other parents of Cystic Fibrosis sufferers helpful for providing support and sharing information.

"It takes a while to get into CF and how you treat children who have it. We're all that little bit more worried when he coughs," says Ian.

Alex had a number of issues when he was born, including meconium aspiration (stool in the amniotic fluid). "He swallowed some of it and had to be resuscitated. We were very lucky. We had a team of 26 people in the ward. It was scary."

However, after three days, they brought Alex home and when he was two weeks old he started taking medication.

"He takes a pancreatic enzyme which helps his body to absorb fat and he started on a prophylactic antibiotic for the first two years of his life. He takes a multivitamin and vitamin D and a salt supplement. He has a rigorous physio routine and a nebuliser of saline solution," says Ian.

"Cystic Fibrosis is a salt imbalance so he nebulises it and the salt gets into his lungs and absorbs the secretions and liquids in his lungs. That's what the salt in our bodies does, it unblocks things. So the saline Alex is taking fills his body with the salts we would naturally have. Alex tastes like a bag of salt and vinegar crisps if you lick him!"

It is the kind of research paid for by The Children's Medical & Research Foundation (CMRF) that has led to this kind of preventative treatment. Twenty years ago, the focus was on treating infections after they happened rather than preventing them. "That's where the research comes in," says Ian.

While Alex is a healthy two year old, his condition does affect how his parents treat him. "It affects how we treat him and also how we are with other people. We live in a school in Rathfarnham so to this day, if someone has a cough or a cold, we ask them to stay away. We're blunt and honest with people about it.

"We're trying to wrap him in cotton wool without putting him in a bubble. We want him to live as normal a life as possible.

"We were in the zoo in the rain today. He's able to play with other kids, he swims, he does everything every other kid can do."

Ian is aware that he can't keep Alex wrapped in cotton wool forever. "He's going to start Montessori in September and we are petrified to be honest. We don't know what's around the corner.

"We have friends with children Alex's age who have spent half their life in hospital. We feel very lucky, we have time and energy in that we got an early diagnosis, we started treatment early. Alex has lived a very normal life. We know that down the line things can go wrong. Alex genetically has the most severe case."

"The treatment we have got from Crumlin and from the team there, the work that they're doing there, has made a massive difference to our lives."

The Children's Medical Research Foundation works in conjunction with Crumlin children's hospital, doing the research that provides breakthrough care for sick children.

It is research like the Cystic Fibrosis study called Shield CF, headed by Dr. Paul McNally in the CMRF that is creating a new approach to treating CF and helping children like Alex.

"We're on the cutting edge of research that is being done worldwide," says Ian. "The belt that is being used [for Alex's physiotherapy] is the best but it's hugely expensive. It's a piece of Velcro but it has been proven scientifically to work better. Life expectancy is going through the roof thanks to research.

"Alex wouldn't be as healthy and as big and as great as he is now if it wasn't for the research and proactiveness of the team. The research is right on the cutting edge and it is great to see in this country because we have the highest prevalence of CF in Ireland –it's one in 19 people."

Much of the work carried out at the CMRF is funded by Irish-American investor, Richard Connolly. A research unit has just been opened in his name and he's been supporting the CMRF for over 30 years now. In that time he has raised $5m.

"I got involved about 32 years ago when a college friend of mine called me. I was a competitive golfer and a friend asked me to run a tournament in Boston for CMRF and I said sure. That's now 32 years ago and I've been doing it ever since," says Richard.

"My grandparents were from Ireland. We have great pride in our roots and have been supporters of the American Ireland fund for years," he adds.

Because of his upbringing, Richard always wanted to give something back.

"I have a philosophy: My father came from no money but they were great parents. I feel very privileged. If that happens to you, you have an obligation to give back so other people come along and participate too," says Richard.

"Philanthropy was a big part of my life since my early 30s. I think if I didn't have the parents I had, I wouldn't have been successful. You have to have a tremendous amount of luck. It's an obligation to give back.

"I grew up as a caddy. There was a caddy fund called the Ouimet fund and the motto of that fund is 'for what golf has given to you, give something back to golf'.

So I say, for what life has given to you, give something back to life."

For more information, or to make a donation, log on to www.cmrf.org

Health & Living