HEALTH activist Emma O’Shea has received Skyclarys after years of campaigning for access to the treatment for Friedreich’s Ataxia (FA).
Emma (26), from Kealkill, was among 200 young people living with FA who lobbied for the HSE to fund the medication, which could significantly slow the progression of the rare condition.
Emma, whose older brother Timmy sadly died of FA, held a face-to-face meeting with Taoiseach Micheál Martin in recent months to plead her case, and a public meeting at her former primary school was well supported as the local community rallied to the cause.
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The HSE’s decision not to fund the drug prompted widespread criticism and renewed calls for intervention, with that decision reversed in late August.
“I’m absolutely over the moon. It’s been some journey to get to this point, with plenty of ups and downs,” Emma told The Southern Star. “There have been moments when it felt like a long road, but to finally have the medication in my hand is just incredible.”
She added: “I’m so grateful to everyone who supported us and helped us along the way. It really is hard to put into words.”
Emma, who has just started her third-level education, posted a reel to her Instagram account showing her taking the drug for the first time.
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Independent Ireland leader Michael Collins, who has backed the campaign from day one, welcomed the news on an emotional day for Emma, her family and supporters.
He paid tribute to Emma’s courage in sharing her experience publicly and becoming one of the faces of the campaign.
“This young woman has shown extraordinary courage, strength and determination,” he said.
Deputy Collins also praised Emma’s family and thanked supporters in West Cork and across Ireland for standing with patients and their families.
“Your voices made a difference!” he said, adding it took incredible bravery for Emma to put herself out there publicly, to share her personal struggles on social media and to become one of the faces of a national campaign.”
The campaign had included a planned protest in Dublin and appeals to Taoiseach, Tánaiste and Health Minister Jennifer Carroll MacNeill to intervene.
“Emma never gave up, and neither did her family. They deserve enormous credit for everything they have done, not just for Emma, but for every patient fighting this terrible disease.”
