WATCH: 'How much are our lives worth': Longfordian battling deadly disease makes HSE plea

Kiara Lynch (42) was diagnosed with Friedreich's ataxia (FA) at the age of just 13 A North Longford woman with a rare, neuromuscular disease, which causes loss of mobility, balance, and coordination, who is campaigning for access to life-changing treatment for her and 200 patients, has asked