Wicklow father advocating for change in how rare diseases are regarded

Wicklow town joined the global chain of lights celebrating Rare Disease Day by illuminating St Patrick’s Church on Tuesday night.

Rare Disease Day fell on Tuesday, February 28, as monuments, offices, schools and homes were lit up to raise awareness for the 300 million people living with a rare disease and their families.

Les Martin is the father of Cathal ‘Cogs’ Martin, who sadly passed away in 2020 after a brave battle against Metachromatic Leukodystrophy (MLD), which he was diagnosed within 2016 aged two-and-a-half.

Cathal’s diagnosis allowed for his brother Ciaran’s early diagnosis just prior to his first birthday.
Les said: “Rare Disease Day is about raising awareness, it is a celebration of wonderful people and an occasion to think of the families and children who live quietly with rare conditions throughout Ireland, often in very difficult situations. It can be isolating and difficult to be amongst a small group of people with a particular condition.

“But considering collectively the 6,000 plus conditions that may affect up to 5 per cent of the population during their lives. That’s 300,000 people, 70 per cent of whom are children.

“Rare is not that rare, rare is many, and together we are stronger when it comes to supporting each other, and advocating for a change in how rare diseases are regarded in this country.

“There is a lot of work to do by the government and HSE to address the needs and the rights of the rare population who are currently underserved.”

There are two main charity organizations in Ireland who are actively supporting the community. Rare Ireland Family Support Network is a national group that specifically support families living with RDs and have a very active and helpful social network of carers.

“Rare Disease Ireland (RDI) is involved in advocating and campaigning on a wide range of issues that affect the community as a whole.

“I would encourage anyone who may be interested or effected to reach out and engage with the community that is already there and growing steadily,” added Les.