When her young daughter Holli wasn't meeting gross motor developmental milestones, such as sitting up without support or rolling back and forth, Susi Vander Wyk repeatedly took her to the doctor to find out what was wrong.
Ultimately, genetic testing revealed that Holly suffered from spinal muscular atrophy (SMA), a hereditary motor neurone disease in which special cells in the spinal cord and brain do not function properly. Motor neurons influence voluntary muscles used for crawling, walking, head and neck control, and swallowing.
There is no cure for SMA. Like other neurodegenerative chronic diseases such as Parkinson's disease and multiple sclerosis, it gradually worsens. Parents like Susi from Chilliwack, B.C., must stay strong while watching their muscles weaken and their children need more support.
“I was pregnant at the time and had a two-year-old son, but Holly was diagnosed with SMA and told me my unborn baby had a one in four chance of having SMA too. “It was a terrible time.” says Susi, who was told by Holli that she would never walk or live after the age of eight. “For years they told me there was nothing they could do,” she said. “Take your baby home and love him for as long as he stays.”