Emily Felix (28) has remained hopeful and “motivated” that one day a treatment would become available for the rare disease that has shaped her world. Felix, from Kilkenny, was diagnosed with Friedreich’s ataxia (FA) at the age of 12, one of only 200 people with the condition in the country.

Jodie Donovan never liked wearing high heels. She struggled to walk in them, feeling unstable and off-balance. Even taking a few steps was a challenge, so she would often forego the skyscrapers on nights out in town and opt for flats instead.