Lewis and his parents, Padraig and Ann Marie, pictured after meeting with Sinn Féin leader, Deputy Gerry Adams, Senator Rose Conway-Walsh and Michelle O'Neill, leader of Sinn Fein in Northern Ireland, in Ballina a few weeks ago. Photo: John O'Grady.

Castlebar family's concerns highlighted in Dáil Éireann

SINN Féin Deputy Mary Lou McDonald has raised a question regarding the government's commitment to enhancing the lives of those with disabilities.

The Dublin TD cited the case of Lewis Harte from Castlebar. He suffers from Duchenne muscular dystrophy, which is a very serious life-limiting condition affecting a very small number of boys in Ireland.

She elaborated: “Lewis will turn six 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, 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 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.”

Deputy McDonald was assured in Dáil Éireann that the Minister for Health, Simon Harris, will be made fully aware of the matter.