The mother of a young boy with a severe muscular disease is appealing to the HSE to fund the miracle drug Spinraza.
Fiona Bailey's nine-year-old son Sam is living with Spinal Muscular Atrophy, a life-limiting, degenerative muscular condition.
He was diagnosed at 13 months old and now uses an electric wheelchair.
Fiona joined us on The Last Word to explain how Spinraza would change Sam's life.
"It halts the degeneration, rebuilds muscle function that has been lost and improves quality of life. It extends their life and makes them stronger."
Over the last few months, Sam has been finding it more challenging to do things, such as playing wheelchair football which he loves.
He also has difficulty swallowing, and Fiona is hopeful that Spinraza would allow him to eat again.
"When Spinraza came to be in December 2016, it was just a lifeline for all of us."
"If you said to me that day that we would be fighting for this drug nearly three years later, I would never have believed you. We've waited too long."
To date, 26 out of 28 EU countries have approved Spinraza.
Fiona wants the drug to be available for all sufferers in Ireland with no limitations: "Anything else would be inhumane. Everyone should have the benefits of Spinraza."
Sam is one of 26 children in Ireland who need it, and Fiona emphasises that he needs it now.
"Every single chest infection he gets is potentially fatal. He's got no reserves. This is a life-saving drug."
"It just doesn't feel fair or right that we're EU members and we're not getting the same treatment."
