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

It follows outcry from those suffering with the neurological disorder Friedreich's ataxia, who had been calling for the Skyclarys drug

Around 200 people in Ireland are living with the rare neurological disease and have been campaigning for the drug to be made available by the HSE