Today, five brave young people - David McInerney and Emily Felix from Kilkenny, Eric Fitzgerald from Mayo, Niamh Ní Hoireabhaird from Kildare and Oisín Pollard from Carlow - and their families attended the AV room to raise awareness around the rare disease, Friedreich's Ataxia. These five young people all suffer from Friedreich's Ataxia and they need the Government's help with regard to approving funding for the drug Skyclarys, which will make a huge difference to their lives. Today, their parents said, "Our kids don't have the luxury of time." They said, "Don't let the cost of this drug be the price of the lives of our sons and daughters." Young inspirational Emily Felix from Kilkenny, who is studying to become a solicitor, said that she had to record her voice on to an app so when her voice is gone, her family will remember what it sounded like. I am asking the Taoiseach and the Minister for Health to help these people and to urge the HSE to approve the funding for Skyclarys drug.

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