Paudie Coady, age 16, has made a direct and emotional plea to Taoiseach Micheál Martin for access to Skyclarys, a drug used to treat Friedreich’s Ataxia.
Paudie, from Buttevant, was diagnosed with the rare neurodegenerative condition, which damages the nervous system and progressively affects movement, coordination and speech.
His condition is increasingly impacting his mobility and speech. Last year, Paudie’s younger brother Rory died from Friedreich’s Ataxia.
Now Paudie and his family are urging the government and the HSE to approve funding for Skyclarys, the first approved treatment shown to slow the progression of Friedreich’s Ataxia.
The HSE previously deferred a decision on funding for the drug, with a final decision expected on Tuesday, August 25.
For Paudie, the decision will have a profound impact on his future.
“It’ll save me. Yeah, it’ll save my life,” he said.
In a direct appeal to Taoiseach Micheál Martin, Paudie asked: “Can I have the tablet?… It’s really important.”
He also made a plea to the Government and the HSE to support people living with the condition.
“I want everyone to get behind me so I can live my life to the fullest. So, please government and the HSE, please get me the drug.”
Paudie has been campaigning alongside his father Craig and grandmother Eileen for access to Skyclarys.
Speaking to Paul Byrne on 96FM, Eileen described the emotional toll the campaign has taken on the family.
“It’s breaking my heart because I’m trying to be there for Craig. I’m trying to be strong for him, I’m trying to be strong for Paudie,” she said.
She also thanked the people who have supported the family throughout their campaign.
“I thank the people so much for helping us and that they are behind us and they’re giving us the strength.”
But Eileen said the family remains frustrated that they have had to campaign for access to the treatment.
“We are begging for this tablet like we shouldn’t have to be begging. It should be there. We should look after our own children, our own people.”
“The HSE, they seem to have control of Paudie’s life and 200 other people’s lives… and they don’t seem to care.”
For Paudie, the effects of Friedreich’s Ataxia have already taken away things he loves.
“He loves soccer so much, he really loved it, and the day he was told he could never again play it took a piece of Paudie’s heart away.”
“Now he’s fighting again. They’re trying to take the rest of his life away.”
Paudie’s father Craig has been at the forefront of the campaign to secure access to Skyclarys for his son and other people living with Friedreich’s Ataxia in Ireland.
The family has been left devastated by the progression of Paudie’s condition and by the lack of access to treatment.
“He’s all I’ve left, so I will fight to my death to get this drug,” Craig said.
“You can see he’s getting worse, and that’s the scary thing about it. Am I going to be living in this house in five years’ time on my own?”
Craig said Paudie is painfully aware of the significance of next week’s decision.
“He knows what’s happening, he knows the deadline… He said it to me, ‘Next Tuesday will decide my life.’”
Craig also expressed his anger and disbelief at the suggestion that the cost-effectiveness of the drug is a factor in the decision on whether it should be funded.
“They’re saying that there’s no value for money in it. So basically they’re saying that my child is not worth it and that’s horrific.”
“You can’t put a price on life and it sickens me. The HSE is there to help us when we’re sick, not to pick who lives and who dies.”
There are around 200 people diagnosed with the condition in Ireland, and the family is calling for access to Skyclarys for those who could benefit from it.
For Paudie and his family, the decision is about far more than medicine. It is about giving a young person the opportunity to hold on to his independence, his hopes and the future he wants to live.
To donate to the Coady family fundraiser, see here.
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