Cork father ‘begging’ for drug for disease affecting son
Craig Coady, a father from Buttevant, is pleading with the Irish Government and health authorities to fund a life-changing medication for a rare genetic disorder. The appeal follows the death of his 13-year-old son, Rory, and the deteriorating health of his 16-year-old son, Paudie.
Both sons were affected by Friedreich’s ataxia, a rare condition that causes progressive damage to the nervous system and can lead to serious heart complications. While Paudie was diagnosed in 2023, Rory was later found to have the condition and suffered from a thickened lower left heart muscle.
A Family in Crisis
The tragedy struck on September 21, 2025, when Rory died following a massive heart attack in the middle of the night. This occurred shortly after a day spent playing for the Buttevant Soccer Club, eating his favorite fish and chips, and spending time with friends.
Mr. Coady is now witnessing a decline in Paudie’s health. Although he did not require a wheelchair last year, Paudie now faces significant difficulty walking and increasing fatigue as he prepares for his Junior Certificate exams.
“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.”
The family’s struggle is compounded by the fact that Mr. Coady’s wife, Della, has Huntington’s disease and is currently receiving treatment in Dublin.
The Battle for Medication Access
The central point of contention is the availability of Skyclarys. In December, the National Centre for Pharmacoeconomics (NCPE) stated it would not recommend that the HSE provide the drug.
The NCPE justified this decision by labelling the medication as “poor value for money.” The agency further noted it was “unsure based on the available clinical evidence” regarding the “meaningful improvements” the drug could offer.
Potential Next Steps
Mr. Coady is scheduled to meet with Taoiseach Micheál Martin in Cork next week. During this meeting, he intends to seek “straight answers” rather than “bluff words” regarding the drug’s approval.
The outcome of this meeting could potentially influence the dialogue between the government, the HSE, and Biogen. It remains to be seen if the government may reconsider the NCPE’s recommendation to allow access to Skyclarys in Ireland.
Frequently Asked Questions
What is Friedreich’s ataxia?
This proves a rare genetic disorder that causes progressive damage to the nervous system and can lead to heart complications.
Why is Skyclarys not available in Ireland?
The National Centre for Pharmacoeconomics (NCPE) did not recommend its provision, citing that it was “poor value for money” and expressing uncertainty over clinical evidence of “meaningful improvements.”
Which other European countries provide access to this drug?
The medication is accessible to patients in France, Germany, Portugal, and Spain.
How should governments balance the cost of rare-disease medications against the potential for improving a patient’s quality of life?