A Clare mother has expressed frustration over the delay in the provision of life-changing medication for her son, and 24 others like him.
In June of this year, it was announced that funding had been granted to allow children suffering with Spinal Muscular Atrophy access to a life-improving drug, Spinraza.
But more than four months on, over half of children with SMA are still waiting for approval, and Children’s Health Ireland says a small number only have received treatment.
Jordan Perez from Sixmilebridge is one of those affected, and his mother Sinéad says parents are living in fear for their children.
