Spinal muscular atrophy is the number one genetic killer for babies, and yet there is no cure or treatment.
In fact, when children under the age of two are diagnosed, their parents are often told to take them home and love them for as long as they have them.
That's not good enough for a group, now based in Chilliwack, fighting for both treatment and cure.
Families of SMA Canada, which were previously based in Manitoba, moved to Chilliwack when Susi Vander Wyk, a longtime board member, took on the non-profit organization's presidency role.
Vander Wyk, whose 14-year-old daughter has SMA, is determined to increase the organization's support for children, parents and families with SMA.
"Our goal is to let parents know that they are not alone," said Vander Wyk. "We are here for them, we are their network."
Spinal muscular atrophy is an inherited disease that destroys the nerves controlling voluntary movement, which affects crawling, walking, head and neck control, swallowing and breathing. One in 40 people carry the SMA gene; if both partners are carriers, their child has a one in four chance of contracting the disease.
There are four types of SMA. Type 1, the most severe diagnosis, happens at birth. Fifty per cent of those diagnosed with Type 1, will die before their second birthday. Type 2 is diagnosed at two years old, Type 3 between the ages of five and 11, and Type 4 is adult onset.
"I know what it's like as a parent when your child is diagnosed with a very serious disease ... for me, it was a sense of loss," said Vander Wyk, whose daughter was diagnosed at two. "Parents are so vulnerable. They don't know what to expect. There is no cure, no treatment, they've been told their time is limited with their children."
Families of SMA Canada is a volunteer-driven organization with at least 95 per cent of donations going directly to SMA research. Since forming in 2000, the organization has committed $2.2 million towards Canadian research, for initiatives that have included clinical trials, treatment development, and researching existing treatments of other diseases.
It's also advocated on behalf of parents and families, distributed information packets and suitable toys to parents new to the disease, and has run a family summer camp for 11 years to help both children and families know they're not alone.
"SMA doesn't affect the brain. These kids are highly intelligent, and they're the happiest kids, but they face a lot of challenges in life," said Vander Wyk.
Families of SMA Canada is working to alleviate some of those challenges.
Families of SMA Canada is located 103-7134 Vedder Road.
For more information, or to donate, call 604-824-1277 or visit the website at www.curesma.ca.