West Cork campaigner Emma O'Shea has received Skyclarys after months of campaigning for access to the treatment for Friedreich’s ataxia.

Emma (26) was among around 200 people urging the HSE to fund the medication, which could significantly slow the progression of the rare condition.

The HSE’s decision not to fund it prompted widespread criticism and renewed calls for intervention, in West Cork and beyond.

Independent Ireland leader Michael Collins TD welcomed the news as 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.

The campaign had included a planned protest in Dublin and appeals to Taoiseach, Tánaiste and Health Minister Jennifer Carroll MacNeill to intervene.

Collins said 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.

“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.”

Friedreich’s ataxia is a genetic disease affecting mobility, speech, coordination and heart health.

In 2024 Skyclarys was approved for all 27 EU member states by the European Medicines Agency.