A Cork father has launched an emotional public battle to secure a rare disease drug for his 16-year-old son, who has Friedreich’s Ataxia (FA).
Craig Coady has already lost one son, Rory, aged 13, to the condition. Meanwhile, his wife, Della, is in long-term hospitalisation due to Huntington’s disease.
The rare, inherited neuromuscular disease leads to progressive damage to the heart and nervous system, with symptoms often starting between the ages of five and 15.
Around 200 people in Ireland suffer from the condition.
Mr Coady told the Fianna Fáil parliamentary party last week that he was “begging” the Government to make the drug available in Ireland.
“The unthinkable happened to my family. It is only two of us left at home from a family of four,” he told the meeting.
“I am begging the Government, the HSE, and [the drug company] Biogen, please get together. I can’t lose him. He is all I have left.”
Sharing his speech, Mr Coady said that while he wasn’t going to put it on social media as he felt saddened to listen back to it, he promised himself he would “do anything” to get the drug to his son Paudie and other patients.
“This is probably the hardest thing I ever done in my life to speak to a room full of Fianna Fáil Ministers, Senators and TDs but you do anything for your children,” he added.
Paudie was diagnosed with Friedreich’s ataxia in 2023 after Craig noticed his son looked a “bit of a balance,” while playing a football match.
It had been recommended by doctors to test Rory for the condition, although he did not display symptoms. A year after Paudie was diagnosed, Rory was told he also had Freidereich’s ataxia, and that the lower left muscle in his heart had thickened.
Rory got a “massive heart attack in the middle of the night” and passed away aged just 13 on September 21, 2025.
Common symptoms can include unsteady movements, loss of balance, slurred speech and muscle weakness, which can leave sufferers needing to use a wheelchair.
The only approved medical treatment for the condition is Skyclarys (omaveloxolone) developed by the pharmaceutical company Biogen, which helps to slow the progression of the disease in patients aged 16 and older.
However, the drug is not available through the HSE – with the reimbursement application remaining under consideration despite a number of high-profile campaigns.
Almost 17,000 people have signed a petition to make Skyclarys available in Ireland.
It is estimated that the treatment can slow the progression of the disease by up to 55 per cent.
The Dail recently heard that while Skyclarys is “not a perfect medicine,” nor is it a cure, it has been shown repeatedly to have clinical benefits in slowing the disease.
A number of TDs have called for the drug to be provided to Paudie under the compassionate access programme, as happens in France.
He is now speaking out about the rare disease and patients’ inability to access much-needed drugs, amid calls for the Government to reform the reimbursement process.
Last month, Taoiseach Micheál Martin admitted in the Dáil that there is a “growing issue” in terms of how some drugs are coming onto the market, the level of engagement between some companies and the State, and Ireland’s system for reimbursement, insofar as it applies to “orphan drugs” – drugs developed specifically to treat a rare medical condition.
Emily Felix, from Kilkenny, is a young woman who also suffers from the rare disease. Speaking in May, she highlighted how: “Right now in Ireland, patients like me are waiting more than two years for a treatment that already exists and is proven to be effective in countries across the world and across Europe.
“Two years of watching my body slowly fail. Two years of desperately trying to hold onto the little bit of strength I still have in my legs, two years of fighting to preserve my independence, two years of trying not to lose my ability to speak. Two years of knowing this life changing treatment is out there, but just out of reach because I am living in Ireland.”
“Some companies are more accessible in terms of engaging with than others, but that is of no value to those who need the medicines quickly,” said Mr Martin.
‘WE ARE NOT STATISTICS’
Regarding the case of Rory Coady, he told the House: “I am aware of the cases the Deputy mentioned and the urgency attached to them. I have spoken to the Minister for Health about this issue. There is engagement with the company involved in the case of Friedreich’s ataxia.
“The Department had been awaiting responses, but that engagement is vital to trying to get this resolved for Friedreich’s ataxia cases.”
Ms Felix, 28, who was diagnosed with FA at 12 years old, previously said it wasn’t an “abstract policy issue,” not a debate about cost-effectiveness.
“This is the difference between being able to keep my voice or relying on a synthetic one. Between holding onto some independence or being completely reliant on a hoist for every movement.
“Between staying in the job I love or being forced to step away. Between continuing my journey to becoming a solicitor, something I’ve worked so hard for, or watching that dream slip away,” she said.
“We are not statistics. We are not budget lines. We are people with futures we are trying desperately to hold onto,” added Ms Felix.