Father pleads with HSE to acquire lifesaving drug for his son

Olivia Kelleher

A father who lost his young son to a rare disease has spoken of his devastation after the HSE Drug Group deferred a decision on a life-changing drug which he needs for his older son, who also has the condition.

Paudie Coady from Buttevant in Co Cork is one of just 200 people in Ireland living with Friedrich’s ataxia.

The 16-year-old has a rare degenerative disease that progressively robs patients of their mobility and independence. His 13-year-old brother Rory died in September 2025.

The mother of the two boys, Delia, has Huntington’s Disease and is receiving treatment in Dublin.

Craig Coady, the father of Paudie and Rory, told the Neil Prendeville Show on Cork’s Red FM that he fears that history could repeat itself.

“We prayed we would finally bring hope for Paudie. Instead, we have been told to wait (for a decision) again.”

Coady said that Paudie is continuing to deteriorate and needs access to the drug Skyclarys as soon as possible.

He says that he is at a point where he is wondering whether they will have to “leave Ireland” to receive treatment.

“It feels like the lives of my son and every other child in Ireland diagnosed with a condition requiring medication are being measured against a price tag.

"I buried one son because of this cruel disease. I cannot stand by and watch my other son lose more time while decisions are delayed.

"I am heartbroken. I am angry. I am disgusted with the system. Paudie is all I have left, and I will never stop fighting for him”

Skyclarys, the drug for treating Friedreich’s ataxia, is not available in Ireland. The drug was approved in the US in 2023 and in Europe a year later.

The HSE Drugs Group met on Tuesday to discuss whether Skyclarys could be approved for reimbursement. The decision was deferred to allow for a further review that would seek input from specialists.

Friedrich’s ataxia causes damage to the nervous system, resulting in difficulties with coordination, balance and movement, fatigue, difficulty speaking, as well as an increased risk of damage to the heart muscle and diabetes.

The drug costs €280,000 a year. It is publicly funded in a number of European countries.

A GoFundMe page has been set up to raise funds for the drug for the teenager.