Paudie’s younger brother Rory, 13, passed away last September from the rare genetic disorder which causes progressive damage to the nervous system and can lead to heart complications.

Mr Coady met the Taoiseach in Cork on Monday and spoke to him for 50 minutes.

Micheál Martin was described as “emotional” during the “positive” meeting.

The HSE Drugs Group must deliberate on whether Skyclarys can be approved for use in Ireland. While it is not on the agenda for this month’s meeting, which will be held this week, it is on the agenda for July’s meeting.

“They're hoping they can bring [the meeting] forward to the end of June,” Mr Coady said.

“It is [a boost], because we were led to believe it would be September [until the drug would be discussed by the Drugs Group].” 

Mr Coady said that while the Taoiseach “made no promises”, he is “pushing” with health minister Jennifer Carroll MacNeill and the HSE to bring it forward. Mr Coady added: 

He told me, 'I'm gonna do everything I can to get the Skyclarys drug to your son and to 200 other patients'.

Pádraig O’Sullivan, Fianna Fáil TD for Cork North Central, told the Irish Examiner the Taoiseach empathised with Mr Coady and those who are seeking Skyclarys, and that “every effort will be made to expedite the process, while acknowledging the ongoing difficulties with the reimbursement system in Ireland”.

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

However, the decision on whether to provide the drug for reimbursement is ultimately made by the HSE Drugs Group.

Mr Coady told the Irish Examiner the drug could help improve Paudie’s quality of life.

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. He passed away in September 2025.

Mr Coady is seeking Skyclarys for Paudie as his condition is deteriorating and he is becoming increasingly fatigued.

• Louise Burne, Political Correspondent