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

Vivienne Clarke

Craig Coady, who campaigned to have the drug Skyclarys made available for his son Paudie, has spoken of his relief and how the announcement has brought “a bit of light into this house again”.

Coady’s son Rory died from Friedreich’s Ataxia last year, and his son Paudie also has the condition.

“We’ve been through a lot,” he told Newstalk’s Claire Byrne show. Because of the campaign, Coady said he had not been able to spend as much time with Paudie as he would have liked; now he could spend more time with him.

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 that he was never going to get his hands on this drug.”

Coady acknowledged that while he was relieved that 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.”

“It's not right. 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.”

Coady added that he should not have had to sell his soul to get politicians to listen to his story. There had been a lot of mixed messages about the exact cost of the drug, but the drug’s manufacturer, Biogen, had “playing their little game to get the best price.”

It was 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.