My name is Hazel Robinson. I have a daughter that suffers with a condition called cystic fibrosis. Cf is a lung disease which eventually affects every part of your body. So many nights I've watched my child struggle to take in a breath ..I look at her Struggle trying to do things like having the energy to carry her school bag and not wanting any help because she wants to be like everyone else and not stand out..I watch her spend hours everyday using machines to keep her young lungs ticking over.. Swallowing over 40 tablets per day or spending countless weeks in hospital in an isolated room.Couching up blood and the look of fear in her eyes literally breaks my heart.....A life saving/changing drug called orkambi has got FDA and European approval. The Irish government has now said that they will not pay for it.. I am not just speaking for myself,my family and most important, my beautiful baby girl. But I am speaking for all the cf community that this drug can help... I am calling out to the government who is there to PROTECT their citizens, to do the right thing and not prolong anymore suffering caused buy this unforgiving illness.. This disease waits for no one.. Please prolong their lives and let them breath. How can anyone put a price tag on a humans life???