Cork father who lost son to Friedrich’s ataxia devastated as HSE delays treatment for older son
Craig Coady, whose 13-year-old son Rory died from Friedrich’s ataxia last year, has spoken of his heartbreak after the HSE Drugs Group deferred a decision on funding a life-changing treatment for his older son, Paudie, who is living with the same rare condition.
Paudie, 16, from Buttevant, Co Cork, is one of around 200 people in Ireland living with Friedrich’s ataxia, a progressive degenerative disease that affects around one in every 50,000 people and gradually robs people of their mobility and independence.
Craig and his wife, Della, lost Rory in September last year when he died suddenly in his sleep after developing complications associated with the disease. Now, less than a year later, the family fears time is running out for Paudie.
Their hopes of accessing Skyclarys, the first treatment shown to slow the progression of Friedrich’s ataxia, were dashed on Tuesday when the HSE Drugs Group again deferred a decision on reimbursing the drug, saying it would seek further information before reviewing the application again in three to four weeks.
Craig fears his son may not have that time.
“My son Paudie doesn’t have weeks to waste. Every single day his condition gets worse,” he told The Neil Prendeville Show on Cork’s RED FM.
“We prayed today would finally bring hope for Paudie. Instead, we’ve been told to wait again.”
The decision has left the family questioning why another review is needed and whether even more precious time will be lost.
“It feels like the lives of my son and every other child in Ireland diagnosed with a condition requiring expensive medication are being measured against a price tag.”
He says the contrast with other European countries, where Skyclarys is already available to eligible Friedrich’s ataxia patients, only deepens the family’s pain.
While there is no cure for Friedrich’s ataxia, Skyclarys has been shown to slow the progression of the disease by as much as 50%, offering hope of preserving mobility and independence. The drug was approved for use in the European Union in 2024, but it remains unavailable to patients in Ireland because the HSE has yet to approve reimbursement for the treatment, which costs approximately €280,000 per patient each year.
Craig says he is now facing an impossible question.
“Do I have to leave Ireland to get my son the treatment he deserves?
“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.”
The toll on the family has become almost unbearable.
An emotional Craig Coady told Neil Prendeville that Paudie’s condition is deteriorating rapidly. He revealed that his son recently turned to him and said: “Dad, I’m not afraid of dying because if I die, I’ll be with Rory.”
Craig said the remark was particularly heartbreaking because Paudie and Rory were more than brothers, they were best friends.
To compound the family’s suffering, Paudie’s mother, Della, is living with advanced Huntington’s disease, a progressive neurological condition that is steadily robbing her of her independence.
As the family faces the devastating challenges of Paudie’s worsening condition while caring for Della, a GoFundMe campaign has been launched to help support them through what has become an unimaginably difficult time.
http://www.gofundme.com/f/a-family-fighting-the-unthinkable-the-coady-family
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