A Longford couple whose little boy has Spinal Muscular Atrophy are helping campaign for the condition to be included in the new-born "heel prick" test.
The condition causes progressive muscle wasting and loss of mobility and until recently most babies with SMA did not survive beyond two years.
Bróna Noonan from Edgeworthstown says they became concerned that something wasn't right with their son Donnacha when he was crying a lot just 16 days after his birth,but she says it wasn't until three months later that they finally got a diagnosis.
Donnacha has since received breakthrough gene therapy that should mean the progress of the condition has halted, but he's still suffering from the damage caused in the early months.
Bróna says they're now in a regime of intensive physiotherapy in an effort to reverse some of the damage, and Donnacha is being fed by tube.
She says all the evidence shows that if the condition had been diagnosed soon after birth it would have been life-changing for her son.
'Our neurologist actually said that four to five kids in Ireland a year are born with SMA.
It's only five euro per child on the heel prick test, to test for SMA. So within the first 100 hours of life, you would have the heel prick test, and within two weeks you'd know if you had SMA.
You could get a plan in place, you could get your gene therapy or anything else that comes up the pipe line, and your child would lead a normal life it has proven with other children that have had the drug in that time frame.
They are meeting the same milestones.'
