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Tuesday 3 October 2023 Dublin: 16°C

# SPINAL MUSCULAR ATROPHY

Last year
2022
'Timing is key': Parents call for inclusion of rare genetic disease in newborn heel prick test
SMA is a degenerative disease that causes damage to nerves that develop muscle function and allow children to eat, move and breathe.
All time
'I've can't lift my arms, brush my hair, or even go to the toilet alone': Children still waiting on Spinraza drug, Dáil told
The drug is used to treat SMA which can develop in babies and toddlers and can significantly reduce life expectancy.
'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval
Spinal muscular atrophy weakens muscles and causes problems with movement, breathing and swallowing.
'If she gets another chest infection she probably won't make it, that’s the reality'
Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.