Craig Coady from Cork is pleading for a new drug to be made available in Ireland to prolong his son Paudie's life - he has Friedreich's ataxia, a rare degenerative disease
Craig Coady from Cork is pleading for a new drug to be made available in Ireland to prolong his son Paudie's life - he has Friedreich's ataxia, a rare degenerative diseaseCraig Coady from Buttevant has been campaigning for his son Paudie to have access a drug that can treat his rare degenerative disease, Friedreich's ataxia is a genetic neurodegenerative condition that causes damage to the nervous system, heart, and pancreas.
There are around 200 people in Ireland living with the illness. Sadly, in September 2025, Paudie's brother, Rory, died of the same disease at just 13 years of age. A new drug called Skyclarys is giving hope to those with the condition. The drug is FDA approved and can slow down the progression of the disease.
However, it is not yet available in Ireland, but Craig says his son Paudie doesn't have any time to waste. While the HSE Drug Committee met yesterday to discuss access to the drug, they didn't make a concrete decision, with the application deferred. Speaking to the Neil Prendeville Show on Cork’s RedFM, Craig said he was told the application will be reviewed again in three or four weeks, despite the fact it's already available in 10 European countries.
"I try and keep positive as much as I can, but I am going through a lot, I am still grieving my little son Rory. "Craig also explained that his wife was currently in a hospital in Dublin as she has Huntington's disease, a rare and fatal neurological disorder that causes the progressive breakdown of nerve cells in the brain. " is getting worse, I am not going to deny that.
We were away on holidays and it was a struggle. He's a stubborn 16 year old, he tries to walk as much as he can... but every week there's a change.... it's rapid.
"When Craig told his son that the medicine hadn't been approved, Paudie just put his head down and watched the match. "He told me a couple of weeks ago, 'Dad I’m not afraid of dying, because if I die I will be with Rory'. He's so brave.
""I have to keep fighting. Maybe I will have to move country and get the drug elsewhere ... it's awful that we have to fight for our own children in this country.
" While Paudie is still going to school and plans to go into fourth year September, he can no longer write and needs a transcriber to assist him. His speech and breathing are still okay, except for a mild slur when he speaks.
"It is progressive, it's not slowing down, it was really important yesterday to get this drug over the line. It doesn't wait for anyone," Craig said.
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