A Cork family’s plea has put fresh attention on access to rare disease treatment in breaking news ireland. Craig Coady has called on the HSE to move quickly on a reimbursement decision for a drug he says could change the course of his teenage son Paudie’s life after the family already endured the death of Paudie’s younger brother from the same condition.
Paudie Coady, 16, from Buttevant, Co Cork, is living with Friedreich’s ataxia, a rare degenerative illness that affects only a small number of people nationwide. His brother Rory, aged 13, died in September 2025. Their mother, Delia, is also dealing with a serious illness and is receiving treatment in Dublin, adding further strain to the family’s circumstances.
Delay in decision fuels family’s frustration
The case has become one of the most emotional stories in ireland breaking news after the HSE Drugs Group deferred a decision on whether Skyclarys should be reimbursed. The drug is used to treat Friedreich’s ataxia and has already been approved in the United States and across Europe, but it is not yet available to patients in Ireland through public funding.
Speaking publicly, Craig Coady said the latest delay has left the family devastated. He fears valuable time is being lost as Paudie’s condition continues to worsen. His message is stark: after burying one son, he does not want to watch another child decline while administrative processes continue.
Why the drug matters
Skyclarys is viewed as a major development for people living with Friedreich’s ataxia. The condition damages the nervous system and can lead to:
- loss of coordination and balance
- reduced mobility and increasing dependence
- speech difficulties
- severe fatigue
- higher risk of heart complications
- increased risk of diabetes
For families following irish breaking news, the issue goes beyond one household. Campaigners say delayed access to specialist medicines can have life-altering consequences for people with progressive illnesses, especially when treatment windows are limited.
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How rare disease funding decisions are made
The HSE Drugs Group met this week to consider whether Skyclarys should be approved for reimbursement. Instead of reaching a final outcome, the group sought further specialist input. While that may be part of a standard review process, families waiting on treatment often experience these pauses as deeply distressing.
The reported annual cost of the medicine is about €280,000 per patient. That price has become central to the debate, especially as the drug is already publicly funded in several European countries. In latest ireland updates, advocates frequently argue that rare disease patients should not be disadvantaged because their treatment is expensive or because patient numbers are low.
What the family says now
Craig Coady has said he is even considering whether the family may need to leave Ireland to access treatment. A fundraising campaign has also been launched to help cover costs, highlighting the difficult reality facing families when a medicine exists but remains out of reach.
For readers tracking ireland health news, this case also raises wider questions about equity in the health system, the pace of reimbursement decisions, and support for people with rare neurological disorders.
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Why this story matters in Ireland
This is more than a single reimbursement dispute. It speaks to the pressures on families facing severe illness, the emotional cost of delays, and the challenge of balancing public budgets with urgent medical need. It also reflects a recurring issue in news ireland: how quickly health systems can respond when a proven therapy becomes available abroad before it is funded at home.
As this developing case continues, many watching breaking news ireland will be looking for a clear decision from the HSE. For the Coady family, the takeaway is painfully simple: every week matters, and they believe time is something Paudie cannot afford to lose.
