Cork boy will return to school 'with a smile on his face' after life-changing Friedreich's ataxia drug approved

Paudie Coady's father Craig, who lost his a son to Friedreich's ataxia last year, had campaigned to have the drug Skyclarys made available to sufferers, including his son Paudie

Craig Coady with his sons Paudie and Rory. Rory died from Friedreich's ataxia last year.

Cork man Craig Coady, who campaigned to have Skyclarys made available for his son Paudie, has said his son will return to school on Friday "with a smile on his face" after the drug for Friedreich's ataxia sufferers was approved by the HSE.

Mr Coady said Tuesday's announcement  had brought “a bit of light into this house again”.

His other son Rory died from Friedreich’s ataxia last year and he was devastated when he found out his son Paudie also has the condition.

“We’ve been through a lot,” he said. 

Because of the campaign, Mr Coady said he had not been able to spend as much time with Paudie as he would have liked, but now he could spend more time with him.

He told Newstalk radio Paudie had been ecstatic when he heard the news. His friends had been texting him and he would return to school on Friday “with a smile on his face".

“It would have been horrific if he had gone back Friday knowing he was never going to get his hands on this drug.” 

Mr Coady acknowledged while he was relieved the drug would now be covered by the HSE, he was “very angry”.

He had tried to protect the privacy of his sons, but last week Paudie had gone on social media himself “begging can I please have this drug". 

“I really don't want another family with another rare disease to go down the road that we've been down, it's just not right so I'm hoping that the HSE and the Government have learned from this and change this legislation because no family should go through this, it's horrific.

It's horrific to put your life out there, your soul out there, to beg for something you know that can improve your child’s abilities.

Mr Coady added he should not have had to sell his soul to get politicians to listen to his story. 

He also said there had been a lot of mixed messages about the exact cost of the drug.

It is now his mission to get the drug as soon as possible for Paudie. Everyone with Friedreich’s ataxia needed to get this drug as soon as possible, he said.