‘I would’ve loved to have seen him grow up’ - Father calls for newborn screening after son died from terminal condition
The Hard Shoulder · Newstalk
January 24, 202412m 33s
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Show Notes
Minister for Health Stephen Donnelly has confirmed that Libmeldy – the world’s most expensive drug has been approved for use in Ireland.
The drug is used to treat Metachromatic leukodystrophy - or MLD, a rare and life-threatening disease that affects the metabolic system in children.
Les Martin’s eldest son, Cathal, died from the MLD three years ago at the age of six, his younger son Ciaran also suffers from MLD but has benefitted from the drug.
Les joined Kieran in studio to discuss...