OPINION: Why does Ireland keep making the same embarrassing mistakes?

IT is not acceptable that parents of children with serious medical conditions are forced to fight tooth and nail for the requisite medical treatment.

There is nothing new in this shameful situation as the HSE is consistently embarrassed over its dealings in respect of many such cases before eventually being forced to concede due to people and political power.

The latest case involves a five-year-old boy from Castlebar, Lewis Harte, who was born with a condition known as Duchenne muscular dystrophy, which results in sufferers losing their ability to walk at an early age due to muscle loss. It goes without saying that it's a very distressing situation for families.

However, a new treatment called Translarna has become available and it is the first to address the underlying genetic cause of Duchenne muscular dystrophy.

Since 2014, over 400 children in 22 European countries have been receiving this treatment and it has changed their lives.

Yet this country, a nation that likes to be seen as one of the most vibrant and confident in Europe, has gone against the trend as a result of the HSE's decision not to reimburse parents for the cost of purchasing Translarna for their children.

What has Ireland become?

Sadly, not a land for the vulnerable and those most in need. A place where people like Lewis are not extended the dignity and esteem they richly deserve.

Great credit, then, goes to his parents for standing up and taking on the establishment, his mother, Ann Marie, enlisting the support of the national and local media to tell of her devastation and shock at the Department of Health's stance.

It should never have come to this.

Ann Marie stated: “If this drug was made available, then we would be looking at an extra seven to 10 years of our little boy Lewis being able to walk. The way we are at the moment, we are looking at another two years at best.â€

Those who heard her interview with Tommy Marren on Midwest Radio were greatly impressed with her conviction, yet listeners could still detect the genuine fear in her voice, as would be the case for all parents in her situation.

Surely a senior minister of the calibre of Simon Harris won't stand over this decision. He is a good and caring man. But he must act swiftly to offer fresh hope to families like the Hartes by ensuring this medication is made available to the small number of children who need it.

The question of denying it should never have arisen in the first place in a modern society, which Ireland professes to be.

Yet, the same mistakes are repeated over and over again.

PHOTOGRAPH CAPTION: Lewis Walsh (second from left), pictured with Senator Rose Conway-Walsh, Padraig Walsh, Gerry Adams TD, Ann Marie Walsh and Michelle O'Neill, leader of Sinn Féin. 

PHOTO: JOHN O'GRADY