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When Lilah was just a few months old, her parents Nicole and Eric knew something was wrong. Lilah hadn?t been meeting her physical development milestones, her muscle tone was low, and she was ?floppy?. At the time, Lilah?s medical team thought she had hypotonia, commonly known as ?floppy baby syndrome?. Nicole and Eric were told that their daughter would be able to walk in time with physiotherapy.
It wasn?t until after Lilah had turned blue and was rushed to the Children?s Hospital at London Health Sciences with a collapsed lung when she was five months old that she was accurately diagnosed with spinal muscular atrophy (SMA) following a genetic test.
How spinal muscular atrophy affects infants Spinal muscular atrophy is a rare genetic muscle-wasting disease, affecting approximately eight to 10 babies in every 100,000 born in Canada.
With spinal muscular atrophy, the motor neurons in the spinal cord die off, which are vital for muscle strength and movement.  The muscles most affected are closest to the trunk of the body like the shoulders, hips and back ? which are essential for crawling, walking, sitting up and head control.
The disease gradually affects the ability to walk, eat, or breathe, and is the primary genetic cause of death for infants.
?When they sat us down and told us, it was really hard to take in what they were saying,? says Nicole. ?I?d never heard of spinal muscular atrophy, but after Lilah was diagnosed,...