A dad of two terminally ill kids is urging the Government to introduce better screening of newborn babies for rare diseases.
Les Martin’s whole world was turned upside down when two of his three children - Cathal, five and Ciarán, three - were diagnosed with MLD (manual lymphatic drainage); a rare and terminal illness for which there is no cure.
While Ciaran’s early diagnosis at 11 and a half months last February may help save his life, there is little hope for Cathal, who due to his late diagnosis, was only given the life expectancy of five years.
Hoping to prevent other families from going through the same heartache, Les is campaigning for increased screening of such illnesses from birth, before it is too late.
The Wicklow native, who spent six months in Italy while his youngest son Ciaran took part in a trial gene treatment in 2017, told RTE’s Ryan Tubridy Show: “We did some charity work with them in Italy and through those contacts they told us about their new newborn screening program.
“Here in Ireland we test for eighth diseases at birth.
“In Italy, last year they increased their screening from four up to forty.
“The numbers go up and down across the world but we are way behind.
Les, who is also dad to six-year-old Holly added: “Our Italian friends gave us all the information and written offer and asked us what we would do with it.
“So I’ve been campaigning and coming on here to to drum up support and get signatures for a petition but in the meantime I’ve had a response from the minister and he has been receptive of the idea and he is going to meet with some of his Italian counterparts in coming weeks and they have a plan in place to look at it seriously."
He added: “In Italy, in their first year, they detected 350 children and treated them at birth, that they wouldn’t have detected.
“What that equates to here in Ireland, it could detect fifty children every year, one child every week that could be treated for a disease that they have that goes undetected."
When asked why he is working so much to help others during his own plight, he admitted: “Because I couldn’t do anything to save my own child’s life.
“Along comes an opportunity to have another chance,to do the things maybe I should have done to save Cathal and maybe it would have never been a success but.
“I feel a bit of an obligation to the fathers that come after me,
“I don’t want to meet somebody in a week’s time carrying a child like Cathal in his arms and know that I could have done more to shout out on his behalf.
“I’d rather meet the child that was saved by this screening program."
He added: “It’s on a plate for us, like it’s cheap as chips. Like i’s about fifty quid per child in Italy.
“It’ll take about €3 million euros to run it here, it can be up and running very shortly but there are reasons why they can’t just up and do it and the minister has explained those and we are going to chat more about that.”
