The life-changing drug, Spinraza, was approved after a very long fight in June providing great hope for children with SMA (spinal muscular atrophy) and their families. Four months later, the drug HAS been purchased, but the HSE say administering the drug is delayed by resource issues and bed shortages.
The bodies of these children continue to deteriorate without Spinraza. SMA takes away basic functions – breathing, eating, walking.
I am begging the HSE to help these children NOW.
