Posts Tagged ‘Rare Diseases’

Les Martin and the mission to detect rare diseases

March 3, 2020

 

Les Martin - Rare Diseases

Les…never in your wildest dreams did you think you would end up on stage talking to a room full of women in Wicklow on a Friday afternoon as part of the International Women’s Day celebrations organised by Network Ireland.

I was the only other brave man there but for very different reasons.

When your son Cathal was born, I’m sure you and your wife Lynda were excited beyond belief, but then life threw him the ultimate unlucky straw and he was faced with a short life with a debilitating condition, which could have been treated if only extensive tests were done at birth, as they do routinely in Italy.

This dad never planned on standing in front of this group of women on this Friday, appealing for help and telling a personal story to hopefully help other babies to avoid the cruel path that their family has endured.

Les stood on stage, he shared his family photos, he showed us some charts to explain how this problem could be solved in Ireland, he showed us some more photos and he took us though some of the very painful steps that they have been though together.

He wasn’t a polished speaker, he didn’t have a polished presentation, he was just a dad who stood there and bravely opened his heart and asked for our attention, so that life might be better for someone else down the line.

Les had every woman on their feet when he finished his talk and there were tears in every single eye in the house, including mine.

Les Martin, brave dad, I salute you and I’m sorry that this had to be your Friday….

Greg

Greg Canty is a Partner of Fuzion Communications, a full service Marketing, PR, Graphic Design and Digital Marketing agency with offices in Dublin and Cork, Ireland

Les is campaigning for more extensive testing to be done on babies when they are born. The Irish ‘Heel’ test is done for 9 conditions – in Italy they test for 40 conditions which can help teh early detection and treatment of rare diseases.