Blog raises awareness of fatal disease
Spinal muscular atrophy is a group of inherited diseases that cause muscle damage and weakness, which worsen over time and eventually lead to death.
Five-month-old Avery Canahuati was diagnosed with spinal muscular atrophy Type 1, also called Werdnig-Hoffman disease, and it’s the most severe type. Infants born with SMA Type 1 are born with very little muscle tone, weak muscles and feeding and breathing problems.
“Imagine you’ve been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?” says the blog that Avery’s parents have created to raise awareness about spinal muscular atrophy. The blog, Avery’s Bucket List, is written in Avery’s voice and has received over 100,000 page views and has more than 4,000 followers.
Spinal muscular atrophy is a genetic disease that usually comes from a defective gene in both parents, according to the National Library of Medicine. SMA affects 4 out of every 100,000 people. There is no cure for the disease, but the SMA Foundation says “new therapeutics have entered clinical trials or are approaching trials in the near future.”