Posted by Michael Wonder on 18 Sep 2019
Three-year-old Matilda's ability to walk is giving hope to those with spinal muscular atrophy
18 September 2019 - The disease, which has been described as motor neurone disease for children, is the leading cause of genetic death in Australian children under the age of two.
It didn't take long for Seona and Hugo Donald to realise something was amiss with their daughter Matilda.
At just three months old, Matilda was experiencing tremors, reflux, and was unable to bear any weight on her legs.
In the past, such a diagnosis was a death sentence, but thanks to treatment with the drug Spinraza, Matilda is now a thriving three year old.
But currently, Spinraza is only available on the Pharmaceuticals Benefit Scheme for people under the age of 18.
On Wednesday, Health Minister Greg Hunt guaranteed that with the recommendation of medical experts, the government will list the drug for adults as well.
