UPDATE: According to the blog averycan.blogspot.com, baby Avery Lynn Canahuati passed away yesterday, April 30, 2012. Her dad wrote: "Hello everyone this is Avery's father. Avery passed away yesterday sometime around 3pm due to pulmonary complications related to SMA. In short, one of her lungs collapsed and she went into cardiac arrest. I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital. Avery's passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctors appointment only three days ago. While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends."
Last weekend, five-month-old Avery's blog went viral. She had been diagnosed with and incurable genetic disorder called spinal muscular atrophy (SMA) on April 6. On Sunday, she (through dad, Mike) responded to the tragic headlines with a typically plucky Facebook post, "Hey that's me! I'm an 'Internet Sensation'...only one thing, I'm not dying. I'm living!"
When Avery was first diagnosed, her doctors explained to Mike and mom, Laura, that she had only had about 18 months to live. The family also learned that SMA, while relatively unknown, is the number one genetic killer of children under the age of two in the United States. Part of their mission is to raise awareness about the disease.
"We had several days of sitting in shock and crying and then we pulled ourselves out of that," Laura told Good Morning America. "Since we had such a short time, we knew we wanted to make the best of it." They created a bucket list for Avery which they shared on her blog. Some of her upcoming plans included being a cheerleader, swimming with dolphins, and staying up past her bedtime watching TV with mommy and daddy.
Shine posted this slide show before we received the heartbreaking news of Avery's death. Our thoughts go out to the brave and inspiring Canahuati family and all of those who suffer from SMA. Here are some of the items the sassy little girl had recently checked off her list.