For Craig Coady and his family, yesterday brought the news they feared most.
After losing his son Rory to Friedreich’s Ataxia, Craig is now fighting to secure access to Skyclarys for his 16-year-old son Paudie, who is living with the same rare and progressive condition.
The HSE Drugs Group recommended that Skyclarys should not be reimbursed by the State.
Craig reacted with devastation, describing it as the “worst day” since the passing of Rory and saying his family had been left feeling “so let down”.
He called on the Government to intervene and overturn the recommendation, describing the situation as cruel and inhumane.
Skyclarys is the first and only approved treatment for Friedreich’s Ataxia and offers the possibility of slowing the progression of the condition.
For Craig, the issue is about giving Paudie every possible opportunity while there is still time.
The 16-year-old is already experiencing the impact of Friedreich’s Ataxia in his everyday life. Speaking recently on Cork’s 96FM Opinion Line, Craig described a family trip to Garretstown Beach where Paudie was unable to walk on the sand because of the effects of the condition.
Craig has continued to campaign for access to Skyclarys while also caring for Paudie and dealing with the loss of Rory.
The family is facing further hardship, with Craig’s wife Della receiving full-time care in Dublin due to advanced Huntington’s disease.
Yesterday’s recommendation is not yet the final decision.
The matter will now go before the HSE Senior Management Team on August 25, making the coming weeks critical for the Coady family and others living with Friedreich’s Ataxia.
Labour TD Eoghan Kenny, who has been engaging directly with Craig and the Coady family, said the recommendation was “deeply disappointing”.
He said the family’s circumstances made the issue particularly close to home, having already suffered the loss of one child to Friedreich’s Ataxia while another is living with the condition.
Kenny said he will write to HSE CEO Anne O’Connor ahead of the August 25 meeting and ask that the experiences of families such as the Coadys are fully considered before a final decision is made.
“This isn’t about politics. It’s about people who are asking for every possible chance to live longer and live better,” he said.
Independent TD Ken O’Flynn also expressed his disappointment at the recommendation.
The decision has also been criticised by Ataxia Foundation Ireland, which is urging people to contact their TDs and public representatives ahead of August 25 and ask them to support access to Skyclarys.
For Craig Coady, however, the issue remains painfully simple.
He has already lost one son to Friedreich’s Ataxia.
He is now fighting to give his other son every possible chance.
And yesterday, he was told that the treatment he believes could help Paudie may not be made available through the State.
The Coady family, who are local to Buttevant, will also be supported by an 80s Night for Paudie Coady at the Talbot Hotel Midleton on August 29, with proceeds going towards the family.
