'If there's a price tag on every child in this country, it’s a sorry country': A Cork father's fight to save his son

Craig Coady talks about his fight to save his son on The Deirdre O’Shaughnessy Podcast.

Craig Coady joins Deirdre on today’s podcast to talk about his meeting with Mr Martin, losing Rory, and the tragedy of his wife Della’s Huntington’s Disease.

Sixteen-year-old Paudie Coady has Friedrich’s Ataxia, a rare, degenerative neurological condition. Last year, the same condition claimed the life of his younger brother Rory.

The boys’ mother, Della, has advanced Huntington’s disease.

Paudie and Rory's dad, Craig, is in a race against time. On Monday, he met Taoiseach Micheál Martin as part of his campaign for the HSE to introduce the drug Skyclarys in Ireland.

Skyclarys would slow down the progression of Paudie’s illness and give him a better quality of life.

Joining Deirdre O’Shaughnessy on today’s episode, Craig says the system for approving new drugs in Ireland is not working.

“Look at the silly money the HSE are spending on mistakes in hospitals. You know, you have someone up there that's going around high-fiving, yeah, I saved €500,000 here, I saved €1.2m here, I saved this here, but yeah, how many lives have you saved?

“If there's a price tag on every child in this country, well, it's a sorry country,” he said.

“Do you want to go to bed every night thinking, God, I hope my child doesn't really get sick because there's no hope?"

After meeting the Taoiseach — whom he describes as “a family man”, who was emotional during their meeting — Craig is hopeful that there will be progress on Skyclarys.

“He had a representative down from Dublin, a HSE/Department of Health representative, and he said it is on the agenda for July... He said that they were trying to push that meeting forward and he was hoping that it would happen.

“He understands that Friedrich’s Ataxia doesn’t wait.” 

Craig joins Deirdre on today’s podcast to talk about his meeting with Mr Martin, losing Rory, and the tragedy of his wife Della’s Huntington’s Disease.