His older son Paudie, 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 (NCPE) 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.

Mr Coady told the Irish Examiner the drug could help 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 for the condition, despite him not displaying 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.

Mr Coady is now watching Paudie’s condition deteriorate. 

He will start 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 urged 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.