'How much is a life worth?' Emily Felix has a rare disease that will rob her voice and is fighting for access to a drug called Skyclarys

At just 28, Emily Felix has been 'forced to face the reality' of her diagnosis many times, but she’s holding onto hope that there could be a treatment in Ireland soon. Emily, from Kilkenny, has Friedreich's ataxia, a very rare neuromuscular disease that progresses over time and affects everything from her movement to her speech. […]