Avery Lynn's courageous battle to live life to the fullest with a genetic order called SMA has ended. The inspirational infant, who just a few days ago was rapidly checking off items from her online bucket list, passed away yesterday afternoon.
The tiny five-month-old, who won the world's heart through an online blog and bucket list, died unexpectedly Monday afternoon, said her Dad Mike at Avery's blog today:
"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. I'm going to share a note Avery gave me back when all of this started, but made me promise not to open until I knew the time was right..."
Avery's note, like her blog, was written in the first person as if from Avery herself, and said, "Little did I know soooooooo many people would care about me and while I'm flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA."
Avery Lynn: Smiling to the end. This photo was taken 20 minutes before her lung collapsed and she passed away, said dad Mike Canahuati.
Avery's bucket list went viral on the Internet, attracting over 2 million views in the last couple of weeks. Born last November in Bellaire, Texas, Avery was diagnosed with the genetic disorder called Spinal Muscular Atrophy Type 1, or SMA. SMA Type 1, also called Werdnig–Hoffmann disease, is the severest form of the disorder, with infants rarely surviving past the age of two years. And at just five months old, Avery had already lost the ability to move her legs.
During an unimaginably dark period, the Canahauti's threw their doors wide open, and allowed Avery to bask in the sunlight and raise awareness about the insidious disease that robbed them of their daughter.
Avery's biggest bucket list wish, was always raising SMA Awareness on a global scale, in the hope that testing for the disorder, would become a routine procedure.
The infant told everybody who visited her blog about the song daddy sang to her the day they met. The song called "Wavin' Flag" Avery said, should lead the way in the fight against SMA , and she wanted it played:
"Whenever my journey here on Earth is over, which will hopefully be many many years from now. And on that day, as my daddy's song plays for me, I hope people from all walks of life will line the streets and wave their flag for me and all of my friends (past, current, and future) in support of SMA Awareness!"
This is Avery's song:
Dad, Mike Canahuati said, "Avery also wanted to help raise the remaining $365,000 (out of $1 million) needed to bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends. Dr. Kaspar's SMA Gene Therapy" added Canahuati, "could cure Avery's friends or at the very least offer advancements towards a cure for them."
Avery's parents ask that those wishing to help others suffering with SMA, donate to Dr. Kaspar's SMA Gene Therapy through Sophia's Cure, a non-profit organization.
Avery's blog; Facebook and Twitter pages.