He began receiving Spinraza – the first and only treatment for the condition – last year, and Amy is now campaigning for all families affected by the condition to have access to the drug.
Amy, from Alloa, Clackmannanshire, said:
When Zac was diagnosed with SMA, my world began to fall apart. SMA is a cruel condition and the future for our family looked increasingly bleak. But all this changed when we heard about Spinraza. Our spirits were instantly lifted.
While it’s not a cure, it is buying us valuable time with Zac and enabling him to reach milestones we never thought would be possible, such as picking up his cup for a drink and moving his legs. Zac has so much to offer the world and this is the only treatment that is giving him the chance at life.
As parents, my husband and I are determined to secure the happiest life possible for Zac and his brother. Life is for living and making memories and we will face whatever challenges lie ahead together as a family.