Craig Coady's 13-year-old son Rory passed away last September from the disease, while his 16-year-old son Paudie currently has Friedreich's Ataxia.
A father of two sons who have suffered from a degenerative disease has called on the Government to fund the medication for the condition.
Craig Coady's 13-year-old son Rory passed away last September from Friedreich's ataxia, while his 16-year-old son Paudie currently has the disease.
He was among those calling for a drug called Skyclarys, and is shown to slow the symptoms by up to 50%.
The rare disease causes nerve damage, muscle weakness and mobility loss.
Speaking on Kildare Today, Mr Coady said that his son Paudie no longer plays with his friends due to the deterioration of the disease:
"He has a lot of fatigue, he no longer plays with his friends, because he can only walk for 10-15 minutes, a lot of people stare at him because they think he's after drinking alcohol, because that's how he looks when he walks, so he just stays in now."
As well as this, Rory and Paudie's mother was diagnosed with Huntington's disease six years ago, describing the past few years as "tragedy after tragedy".
"It's horrific, we've been hit with tragedy after tragedy, and to lose Rory, I ask myself sometimes how I get out of bed."
The drug has been described as not being cost effective by a HSÉ Drugs Committee, with funds being highlighted as an issue.
A final decision is to be made by the HSÉ Leadership Team by August 25th.
Mr Coady says the Skyclarys drug would give hope and dignity to those with the disease, as treatment at the current fee is estimated to cost €280,000 per patient per year.
Mr Coady has called on the Government to fund the medication, calling it a "game-changer":
"It's down to money here, what one of them said in the committee is that it's not value for money, how can you put that on a child, it's terrible."
The full interview can be heard below:
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