After Losing One Child, Cork Dad Begs for Treatment Ireland Still Won’t Fund — While €670 Million Goes to Ukraine A Cork father whose family has already been devastated by a rare genetic disease is publicly pleading with the Irish Government and HSE to fund Skyclarys (omaveloxolone), the first approved treatment shown to slow the progression of Friedreich’s ataxia. Craig Coady of Buttevant lost his 13-year-old son Rory to the condition in September 2025. His older son, Paudie (16), also has Friedreich’s ataxia and is deteriorating. The progressive neurodegenerative disorder damages the spinal cord, peripheral nerves, and often the heart. Paudie, who did not need a wheelchair last year, now faces increasing mobility difficulties and fatigue. Coady has said: “I can’t lose him. He is all I have left.” Around 200 people in Ireland live with Friedreich’s ataxia. Skyclarys received European Commission approval in February 2024 for patients aged 16 and older. It is available in several other European countries, including France, Germany, Portugal, and Spain, but remains unreimbursed in Ireland. The HSE received the pricing and reimbursement application in August 2024. The HSE Drugs Group deferred a decision in mid-July 2026 pending further specialist input, with a hoped-for resolution within weeks. Taoiseach Micheál Martin has stated he wants patients to access the drug “as fast as we possibly can” and previously told Coady he would do everything possible to help. Lauren Shaw, another young Irish woman living with the condition, has also appealed publicly for funding, describing progressive damage to the spinal cord and peripheral nerves.Campaigners and support groups have contrasted the delays with Ireland’s overall support for Ukraine. Recent government announcements, including a further €125 million package, have brought Ireland’s total assistance to Ukraine since Russia’s encroachment in 2022 to more than €670 million (encompassing humanitarian, stabilisation, energy, and non-lethal military support). Public posts and commentary, including from groups supporting frontline health staff, have highlighted the Coady and Shaw cases alongside this figure, arguing that Irish patients are being left without a treatment that could slow irreversible decline while substantial public funds are directed overseas. One widely shared post noted the contrast with “almost 200 more people in Ireland” affected and called on Micheál Martin, Simon Harris, and the Government to prioritise funding for Skyclarys immediately. Friedreich’s ataxia has no cure. Skyclarys is the first therapy demonstrated in trials to slow disease progression. Families emphasise that every month of delay allows further irreversible loss of function. Coady has indicated the ongoing deferral could force extreme measures, including considering relocation abroad for access. The HSE maintains that reimbursement decisions follow objective clinical and economic assessment processes, with commercial negotiations ongoing. Families and advocates continue to press for an expedited final decision, stressing that time is critical for those living with the rapidly progressive condition.