Mary Lou McDonald (Dublin Central, Sinn Fein) | Oireachtas source

My question revolves around a commitment in the programme for Government, on page 5, to enhance the lives of those with disabilities. Lewis Harte is from Castlebar, County Mayo. He suffers from Duchenne muscular dystrophy, which is a very serious life-limiting condition affecting a very small number of boys in Ireland. Lewis will turn six on 2 November, next Thursday. He is mobile, and he is full of fun. He is a gorgeous little boy but all of this will change in a matter of months if he is not granted access to the drug Translarna. The drug is available in 22 European countries. Children like Lewis have only a very small window of opportunity within which the drug is effective and the clock is ticking for Lewis. Another boy, three year old [name redacted], is in the same position. Both of these children risk losing their ambulatory capacity, in other words, they will not be able to walk. The Health Service Executive, HSE, has consistently denied children access to Translarna, the drug they desperately need. I am appealing for common sense, goodwill and decency to prevail in this case. Can the Minister give us some assurance that decency will prevail?

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