The father of a child with Friedreich’s Ataxia has issued an emotional appeal to the Government to buy a drug that could help improve his quality of life. 

Craig Coady’s two sons, Rory and Paudie, were diagnosed with the rare genetic disorder that over time causes progressive damage to the nervous system. It also leads to serious heart conditions. 

The boys’ mother is also in hospital in Dublin, where she is being treated for Huntington’s disease. 

On The Claire Byrne Show, Mr Coady recalled how one weekend last September, his younger son, Rory, played a match and had a “great game”. 

“We went to the shop after getting a couple of treats, went home and he had his favourite fish and chips,” Mr Coady said. 

“We watched the match together, played with his friends on the PlayStation, went to bed with his headphones on because he loves music. 

“Next morning, I noticed Paudie was up - no sign of Rory. 

“That's when I went into his room and I heard the music on. So I said, ‘Oh, he must be listening to music.’

“Unfortunately, he was no longer with us, he had had a severe heart attack in the middle of the night to do with the lower left muscle thickened in his heart to do with Frederick's Ataxia.”

The Coady brothers.

Nine months later, Mr Coady said he is “still in bits with Rory” and “very much” still grieving. 

Despite this, he is also focused on persuading the Government to approve the purchase of a new drug, Skyclarys, by the HSE. 

The National Centre for Pharmacoeconomics has warned that the drug represents “poor value for money” and that it was unsure its prescription would lead to “meaningful improvements” in the lives of patients. 

However, Mr Coady said he is aware of sufferers whose lives have been transformed by the drug. 

“There's people that have had Frederick's ataxia in America, Australia and in Europe, are on this medication and it's working for them,” he said. 

“So, I don't see why they're saying it's not; it's obviously down to money with the HSE, it is a costly drug.” 

The Coady brothers and their Dad.

Mr Coady said he left a meeting of Fianna Fáil TD feeling “optimistic” and that the decision now lies with the Minister for Health and the Taoiseach. 

“I just want this drug for my son Paudie and for everyone else because it is progressing a lot,” he warned. 

“I already lost one son and the boy's Mum is no longer in the house.

“Look, it’s just not right for children suffer like this.”

Main image: Craig Coady. Image: Supplied.