As the Acting Leader knows, as public representatives we deal with a lot of different issues, projects in our community and a whole multitude of issues but sometimes we meet some really inspiring people who leave a mark on us and who display immense courage. I met such an individual yesterday evening. Emma O'Shea, from Ballylickey near Bantry, is 26 years of age and suffers from Friedreich's ataxia. To be honest, in my years in public service one of the most difficult encounters I have had was to talk to someone suffering with such a disease, to try to talk about a solution and to offer help to Emma and her mother and father, Ted and Kathleen, who were also in the living room. To be honest, I did not know much about Friedreich's ataxia until recent weeks. As Members know, or may well not know at this stage, more than 200 people in Ireland suffer from the disease. It is deeply debilitating. It is a neurological disease and the end fate is death. Emma lost her brother Timmy nine years ago from the same disease, when he was three years older than the age Emma is now.

Emma has had the courage to speak out and ask for help of the HSE, the Department and the Government. There is drug coming on the system. It would not cure the disease but it would slow its progression. It is offered and available in many countries in the EU and in the US but at the moment the HSE is deciding on its availability and reimbursement for the drug. I appeal to the HSE. Yes there is a cost to the drug but cost should not come into it when we are looking to extend someone's life. It really should not. I appeal to the HSE to replicate what other EU countries have done and to give life to Emma.

Yesterday evening I asked Emma what she would like me to say today because I have her permission to talk. I asked her what words she would like me to use on the floor of the Seanad. She said she watched her brother die and now she is at home in the same place. She sees what is coming and she needs help. As a State we owe it to Emma, and to the many families in this country who live with this horrible disease, to make this drug available. It is not a cure but it is groundbreaking, and this is what scientists have said, in terms of offering more support. Her family, Ted, Kathleen and her younger brother Kevin, would travel the world to keep Emma for longer and we need to do this also as a State.