Dying 5-Month-Old's Bucket List Meant to Spread the Word About Rare Genetic Conditioncarolyncastiglia
UPDATE 5/1: Avery passed away yesterday afternoon. For more information, visit her blog.
5-month-old Avery Lynn Canahuati was diagnosed earlier this month with Spinal Muscular Atrophy, an incurable genetic disease that will take her life within the next 18 months. Avery’s parents, Michael and Laura, are hoping to spread awareness about SMA by sharing Avery’s “bucket list,” a blog filled with all of her activities, from mundane day-to-day goings on like opening presents and taking a bath to throwing the first ball at a baseball game and receiving letters from the President and First Lady. (Not to mention her extensive medical treatments.)
Avery’s father Michael says he and his wife started the blog because they’d never heard of SMA. “Nobody we knew had ever heard of this, and yet it’s the number one genetic killer of infants in the United States,” Michael told reporters. TIME magazine reports, “Avery’s debilitating illness is slowly robbing her of her faculties, first taking away her ability to move her legs and expected to soon leave her arms immobile. Eventually, her lungs will stop working, resulting in her death.”
Though little is known about SMA, Michael and Laura want others to know it is possible to test for the disease. The couple hopes that by spreading awareness about the condition, they can save another family from meeting their sad fate. To learn more about SMA, visit Fight SMA, and to read about Avery’s adventures, follow her blog, Avery’s Bucket List. Avery’s parents have a remarkably positive outlook about making the most of their daughter’s short time here; Michael told reporters, “We can watch her die, or we can let her live.”