John Curran (Dublin Mid West, Fianna Fail) | Oireachtas source

Sam Bailey is an eight year old boy who lives in Rathcoole. This week Sam is in hospital in Crumlin. Glen Farrelly is 16 years of age. He lives in Clondalkin. Sam and Glen and 20 other children suffer with spinal muscular atrophy, which is a degenerative condition. Their parents are without hope at the moment. They are looking at their children with a condition that, week on week, month on month, is getting worse. For anybody in this House who has ever had a child in a serious condition, they will know that the feeling of hopelessness and helplessness is undescribable.

I raise this issue here today because those parents cannot do it themselves. I have raised it before, as have other Deputies, and I have heard the official response. I reiterate the point. The programme for Government in regard to new drugs, in particular, Spinraza, which is the hope for these children, commits to engaging with European countries to make these types of drugs available. The problem is we have evaluated it here and the evaluation system has not made it available-----

See this speech in context