‘I’ve lost my son ... but that’s not what should encourage this change’, says Seán Kenny
The father of a child who died from a rare disease last year is calling for an increase in the number of illnesses that infants are screened for at birth.
MLD is one of a number of diseases that families and advocates are hoping to add to the HSE’s screening programme within the next five years. The goal is part of Rare Diseases Ireland ’s Get Rare Aware campaign.Sightings of basking sharks off Irish coast should give us hope“Aiden’s story is short but vast,” Mr Kenny says. “ put up a tremendous battle. MLD literally crippled him, but he only let it take what it could. He still kept his own personality going throughout the whole thing.
“That’s when the newborn screening came back and said it was cystic fibrosis and I am so grateful because, as scary as CF is, we had a plan in place,” Ms Cross says. “We could get him the medication and we could help him thrive.” The National Screening Advisory Committee was established by the Department of Health in 2019 following the CervicalCheck screening controversy. Since then, Ms McGrath explains, only one test has been added to the newborn screening panel in the HSE.
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