The HSE Drugs Group will review a life-changing treatment in three to four weeks – but the teen ‘doesn’t have weeks to waste’

10:34, 15 Jul 2026Updated 11:10, 15 Jul 2026

Paudie and Rory Coady – brothers with the same degenerative disease. Rory passed away in 2025

A Cork family say their son “doesn’t have weeks to waste” as his condition deteriorates. Sixteen-year-old Padraig ‘Paudie’ Coady has the same degenerative diease which his brother died from, and his parents say they are desperate to get him treatment that could save his life.

The Buttevant teenager has Friedreich’s ataxia, a disease affecting around 200 people in Ireland. He and his family have been left devastated as the HSE Drugs Group is yet to approve Skyclarys, a drug that could vastly improve the lives of those with the condition.

The Group met on Tuesday but declined to decide on approving reimbursement for the drug. It says it will seek further research and review the case again in three to four weeks, but Craig is worried that his son may not have that time.

Craig and his wife Della’s younger son, 13-year-old Rory, died in September with the same condition. The condition, which affects one in 50,000 people, progressively damages the nervous system and ultimately led to Rory’s sudden death in his sleep.

Now, older brother Paudie is rapidly losing his mobility. Dad Craig says the family were so hopeful they would have access to Skyclarys, which has been approved in other countries to treat Friedreich’s ataxia.

Padraig ‘Paudie’ Coady, 16, has Friedreich’s ataxia. His father is fighting to have a life-changing drug approved to treat the disease(Image: Craig Coady)

“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,” Craig said, speaking on the Neil Prendeville Show on RedFM. “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.”

“Every single day, his condition gets worse,” he said.

While there is currently no cure for Friedreich’s ataxia, Skyclarys has shown promising results in slowing the progression of the disease by up to 50%. The drug was approved in the EU in 2014, but access to the treatment remains out of reach for patients in Ireland, as the HSE has not yet agreed to reimburse the € 280k-per-year cost of the drug.

It leaves families in limbo, and Craig said they are considering looking outside of Ireland. He asked, “Do I have to leave Ireland to get my son the treatment he deserves?”

Craig, Della, Rory and Paudie Coady

A GoFundMe has been set up for the Coady family, as they face an incredibly difficult time. Not only is Paudie’s condition worsening, but mum Della is in the advanced stages of Huntington’s disease, which is taking away her ability to function independently.

Earlier this year, Craig shared how Paudie’s condition has deteriorated to the point where he now relies on a wheelchair and can only walk for 20 minutes at a time. He has also lost his ability to write.

According to the European Medicines Agency, Skyclarys has been found to be effective in reducing physical impairment, including improvements for patients in being able to carry out activities of daily living, such as getting dressed, bathing, and eating.

Cork TD Padraig O’Sullivan, who has been among representatives supporting families of Friedreich’s Ataxia patients, said last night: “I can only imagine what this does to patients and their families at the centre of this.

“I will work hard to ensure that this can be done as expeditiously as possible, and am asking that the HSE Senior Management Team meet on the day, the day after, or the soonest date practicable to reach their final decision after receiving the specialist’s opinion. I’ve always said this process is deeply unfair and inhumane. Unfortunately, today is another example of this.”

Thomas Gould TD also shared: “I’ve raised Paudie Coady’s case in the Dail now multiple times. Each time I’ve been told that this meeting is key to getting him access to the drug.

“For all those with Friedrich’s Ataxia, including Paudie, Skyclarys must be reimbursed. People cannot be left waiting for months, if not years, for this vital medication. We will not stop fighting because money should never stand in the way of hope for children and adults.”

You can see the fundraising page here to support the Coady family.