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SOCIAL BOOKMARKS

Dublin mother calls for rollout of potentially life-saving treatment for son, 9

A Dublin mother is pleading with the Minister for Health to put pressure on the HSE to rollout a potentially life-saving treatment for her son.

Fiona Bailey has spent the last few 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.

It is a rare, debilitating and life-threatening disease that affects nerves in the spinal cord.

After much campaigning and petitioning the HSE finally gave the green light for these children to access Spinraza in June.

However, Fiona says four months on, these children are still waiting.

"Not one of those 26 children have received Spinraza and we are absolutely heartbroken and devastated.

"We're facing into another deadly flu season without Spinraza.

"If Sam gets sick, he has 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, it's unthinkable that we could face into another winter without this life-saving drug."