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Stand with Lewis We are totally devastated.
“This is life-changing medicine we are talking about.

Ann Marie Walsh Harte and husband Padraig Harte, who live in Castlebar Co Mayo, were desperately awaiting approval of the drug treatment, Translarna, for their son Lewis (5) who has Duchenne muscular dystrophy.
“My son is five and the news today that the HSE are not going to fund the medicine is devastating,” said Ms Walsh Harte. “To us, the news comes the same as if it were a death in the family

. Everyone is just devastated as this is life-changing medicine within the muscular dystrophy community. The fact that the drug is available in 20 other EU countries and Northern Ireland makes this decision all the tougher for us.”

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