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Dublin: 13 °C Wednesday 20 February, 2019

#Spinraza

# spinraza - Sunday 3 February, 2019

'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs'

Parents of children with a rare genetic condition are fighting for access to a potentially life-changing drug.

# spinraza - Saturday 7 January, 2017

'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.

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