A Dublin mother is pleading with the Health Minister to put pressure on the HSE to roll-out a potentially life saving drug for her son.
Fiona Bailey has spent the last number of years fighting for her son Sam to get access to Spinraza.
The 9-year-old is one of 26 children in Ireland with spinal muscular atrophy, a rare, debilitating and life-threatening disease that affects nerves in the spinal cord.
The HSE finally gave the green light for these children to access Spinraza on June 11th this year.
However, Fiona says four months on, they are still waiting:
"We're absolutely heartbroken and devastated facing into another deadly flu season without Spinraza. Like when Sam gets sick he's got no reserves at all, he gets very very ill in a short space of time. This time last year Sam was in ICU in October and for us its unthinkable that we could be facing into another winter without this life-saving drug."
