16 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.
Their dad Craig is in a race against time. Yesterday, 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 on today’s episode, Craig said 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 €1.2 million 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 Taoiseach Micheál Martin – 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 O’Shaughnessy on today’s podcast to talk about his meeting with Taoiseach Micheál Martin, losing Rory, and the tragedy of his wife Della’s Huntington’s Disease.
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