When her young daughter Holli was not meeting her gross motor development milestones – things like sitting without support or rolling over from front to back – Susi Vander Wyk took her repeatedly to her doctor to find out if there was anything wrong.
Eventually, a genetic test revealed Holli had spinal muscular atrophy, or SMA, an inherited motor neuron disease where specialized cells in the spinal cord and brain don’t function properly. Motor neurons affect the voluntary muscles used for crawling, walking, head and neck control and swallowing.
There’s no cure for SMA. It gets progressively worse, like other neurodegenerative chronic diseases such as Parkinson’s disease and multiple sclerosis. Parents like Susi in Chilliwack, B.C., have to stay strong as they watch muscles weaken, and their child needs more support.
“At that time, I was pregnant, so I had a son who was two, and then Holli was diagnosed with SMA, and they said my unborn baby could have a one in four chance of having it as well. It was a terrible time,” says Susi who was told Holli would never walk or live past age eight. “For many years, you know, they said there’s nothing that can be done. You just take your baby home and love them for as long as you’ve got them.”