'I Can't lose him. He is all I have left': Cork father pleads for meds to save his remaining son

A Cork father is pleading with the Government to fund life-changing medicine for a rare disease that has already caused the death of one of his two sons.

Craig Coady, who lives in Buttevant, lost his son Rory, aged 13, last September to Friedreich’s ataxia, a rare genetic disorder that causes progressive damage to the nervous system and can lead to heart complications.

His older son, Paudie, aged 16, also has the condition, and is starting to deteriorate.

Mr Coady told the Fianna Fáil parliamentary party last week that his wife, Della, has Huntington’s disease and is now receiving treatment in Dublin.

“It is only two of us left at home from a family of four,” he told the meeting.

“I am begging the Government, the HSE, and [drug company] Biogen, please get together. I can’t lose him. He is all I have left.”

Skyclarys, the drug for treating Friedreich’s ataxia, is not available in Ireland.

The National Centre for Pharmacoeconomics said in December that it would not recommend that the HSE provide it, because it was “poor value for money”, and it was “unsure, based on the available clinical evidence”, on the “meaningful improvements” it could have.

Improve quality of life

Mr Coady told the The Echo the drug could improve Paudie’s quality of life.

“Every night, he always gives me a hug and a kiss. I feel that he’s just worried that he’s not going to wake up in the morning, the same as Rory.”

Paudie was diagnosed with Friedreich’s ataxia in 2023, after his dad noticed that he was a “bit off balance” while playing a match.

The doctors recommended testing Rory, though he did not have any symptoms.

A year after Paudie’s diagnosis, the Coady family was told that Rory also had Friedreich’s ataxia, and that the lower left muscle in his heart had thickened.

One Saturday, in September 2025, he played a football match for Buttevant Soccer Club and “had a great game”.

He got fish and chips, which were his “favourite treat”, watched Manchester United play Chelsea, played PlayStation with his friends, and went to bed with his headphones on.

He got a “massive heart attack in the middle of the night” and on September 21, 2025, died aged 13.

Watching condition deteriorate

Mr Coady is now watching Paudie’s condition deteriorate.

He started his Junior Certificate exams on Wednesday and will travel to Lanzarote on holiday next month.

While he did not need a wheelchair last year, he will this year, as he is having difficulty walking.

Paudie is also becoming increasingly fatigued, something that has prompted his dad to campaign for Skyclarys to be approved for use in Ireland.

He is due to meet Taoiseach Micheál Martin next week in Cork, where he says he wants “straight answers” rather than “bluff words”.

When asked what he will say to the Taoiseach, Mr Coady replied: “If it was one of your own, Micheál, what would you do?”

He said it is “really frustrating” to know that Skyclarys is not available in Ireland, when it is accessible to patients in other European countries, including France, Germany, Portugal, and Spain.