'They're running out of time': Parents want HSE to approve 'miracle drug' to save their children's lives 

Shane and Stephanie Whelan with baby Theo. The Whelans want the Government to agree a price with Novartis, the company that produces Zolgensma.

An appeal has been launched for the HSE to give approval for a 'miracle drug' that could save the lives of very small children who have a rare muscular condition. 

Two children in Co Cork and Co Kerry are understood to be the only suitable possible recepients for the drug, Zolgensma, which is used to treat spinal muscular atrophy, a genetic condition leading to loss of movement. The treatment has been hailed as a 'miracle drug' that can lead to vastly improved quality of life and lengthened lifespan.