SMA disease
Leading the way for awareness of spinal muscular atrophy (SMA) has been Whitby woman Tracy Lacey’s mission for the past nine years.
Her daughter Tori was diagnosed with the disease in 1999 at age 1. Tracy and her husband Shawn started up a charity as a way to connect with other families affected by SMA. Tori’s Buddies is a research fund that works under the umbrella of FightSMA, a non-profit organization dedicated to finding a cure.
SMA refers to a group of diseases which affect the motor neurons of the spinal cord and brain stem that are responsible for supplying messages to muscle cells for them to function properly. The disease afflicts infants, children and adults worldwide. It is estimated that spinal muscular atrophy occurs in between one-in-6,000 births. Between 1-in-40 and 1-in-80 men and women carry the gene, according to www.fightsma.org.
Despite the fact SMA is the leading inherited killer of children under two years of age, the disease still remains relatively unknown to most people so part of the crusade is to provide a voice, Ms. Lacey said. AP/ SMA disease
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