Avery Canahuati’s parents pen bucket list for baby when diagnosed with fatal spinal muscular atrophy
UPDATE: Avery's parents announced their daughter passed away suddenly Monday afternoon. Her father, Mike Canahuati, wrote on the blog 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 live, but only for a brief period of time before she passed away after arriving at the hospital," he writes. "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."
In one final post Avery writes to her Mommy and Daddy that she has gone to take care of other family members who have passed and she hopes when people think of her they will think of others who are diagnosed with SMA.
ORIGINAL: When most people think about a bucket list, they have many years to accomplish the tasks, but a five-month-old girl in Texas doesn't have an entire lifetime, she has just months.
Avery Canahuati was diagnosed with spinal muscular atrophy in early April, a genetic disorder that attacks spinal neurons and progressively debilitates muscle function. She was given only 18 months to live. So after a few days of sitting in shock and crying, parents Laura and Mike composed themselves and Mike started a blog written from Avery's perspective.
"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 dies between now and the next 18 months. What would you do?" reads the blog.
They started it to make the best of the short time Avery has and cherish every moment with her, reports ABC. They are also looking to create awareness of SMA and are using social media to do it.
The bucket list includes a lot of things most children will experience with their parents while growing up, such as hugging their parents, swinging on a swing set, riding a bicycle and going to a sleepover. It also includes things that may be harder for Avery and her parents to accomplish, such as going skiing, skydiving and running with the bulls. Avery's dad even has a section of things she will want to do with him such as playing golf and going to a Houston Texans game.
So far since starting the blog, Avery has already accomplished a lot. She has gone to a water park, flown a kite, was on TV and got her first kiss. The blog playfully discusses Avery's progress as she ticks off items on the bucket list among other things.
"O-M-G, a B-O-Y totally kissed me yesterday and he is soooooooo cute," reads the blog post on the day Cooper, another boy with SMA, kissed her. "My mommy and daddy said it might be the best kiss since Ryan Gosling and Rachel McAdams in The Notebook."
Her bucket list has certainly struck a cord with a lot of people and in three weeks has more than two million page views plus more than 100,000 likes on the Facebook page.
"You are such a beautiful little girl and I want you to know that I am praying for you and your parents," writes Julie Van Zandt in the comments section.
"What a blessing to wake up and read your inspirational story," reads another comment. "While my heart breaks for all touched by the pain of your SMA; it also swells with joy that God chose to give you such a wonderful mommy and daddy."
SMA affects about four in 100,000 people and in most cases the person gets it from a defective gene from both parents. The Canahuatis hope by spreading awareness of SMA, other families won't have to go through what they are experiencing.
Avery's dad told CBS, "I refuse to think that my daughter will die in vain."
(Photo from Avery's blog)