Limerick CF parents: 'Our kid's lives are priceless'

 Parents of children with cystic fibrosis demand action from minister at night vigil

Nick Rabbitts

Reporter:

Nick Rabbitts

Limerick CF parents: 'Our kid's lives are priceless'

A recent candlelight vigil outside City Hall Picture: Gareth Williams

“STOP putting prices on our children’s lives, because to us they are priceless.”

That’s the message from Katie Sheahan, whose youngest son Michael, aged three, suffers from cystic fibrosis (CF).

Parents of children who have the genetic condition, which mainly affects the lungs, are calling on Health Minister Simon Harris to make the potentially life-saving drugs Orkambi and Kaleydeco openly available.

They argue it will give their young ones a real childhood and better long-term prospects.

On Friday night last, around 90 parents whose children suffer from the condition gathered at Limerick City Hall for a vigil in memory of those who have died from the condition. But the underlying message is: they want action from the government.

Around 560,000 kids in Ireland could benefit from Orkambi or Kaleydeco, and Kate said: “It will stop kids getting six weeks sickness from school, plus viruses and everyday bugs. It’s a really important drug. We know it’s not a cure: but it gives hope to the CF community because at the moment, we’re living in fear of what the future holds for our children.”

Orkambi is estimated to cost around €159,000 per patient per year, with pressure mounting on Mr Harris to get the drug approved for patients.

Limerick TD Willie O’Dea, who attended the protest, raised the matter in Dail Eireann this week.

He said: “I think we all owe it to fight for these people who are literally fighting for their lives. You cannot really imagine what people who suffer from CF are going through. They struggle to breathe. It’s too hard to even contemplate.”

Kate, who co-organised the vigil, which was held with the support of the charity Tipperary Limerick and Clare for Cystic Fibrosis (TLC4CF), added: “Stop making us wait. The CF community are living in fear. No parent should have to live like this. We are standing here tonight for all the CF mothers and fathers who cannot be here because they are caring for their loved ones in hospitals.”

Joy O’Donoghue, whose eight-year-old son Jason has CF, added: “I don’t want to have to bury my child. I don’t want to have to see other people burying their children. It’s not fair, it’s not right. Our kids lives are priceless.”

At the vigil, a minute’s silence was observed for children who have lost their lives to CF.

A number of other local politicians joined Mr O’Dea at the vigil: former Education Minister Jan O’Sullivan, plus Sinn Fein councillors John Costelloe and Malachy McCreesh.