It's believed early intervention could lead to better results.
There are calls to add Spinal Muscular Atrophy to the heel prick test for new born babies.
Each year in Ireland, six babies are born with the condition known as SMA.
The degenerative condition means that most affected will never walk.
Bróna Noonan is from Edgeworthstown, her son Donnacha was born with SMA.
She says earlier intervention could see much better outcomes:
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