Avery’s Bucket List A Viral Inspiration

by M-Gillies

Little Avery and her dad created a bucket list of things that she had to accomplish. Now Avery's family is working to reach out to people to donate to SMA research so others with SMA might be saved.

“It is only when we truly know and understand that we have a limited time on Earth and that we have no way of knowing when our time is up that we will begin to live each day to the fullest, as if it were the only one we had.”

- Elisabeth Kubler-Ross

Often we think we have all the time in the world to accomplish our goals, whether it be traveling to exotic countries, reading Leo Tolstoy’s War and Peace, or watching the sunset from the highest mountain, the truth is, a lifetime is shorter than what we realize, and for Avery Lynn Canahuati, that statement couldn’t be farther from the truth.

With a bucket list just shy of 200 goals, Avery’s list is divided between topics ranging from “Things I Can Handle Myself, But Would Love If You Join Me In Completing Them”, “Things My Daddy Wants To Do With Me When I Could Be Playing With My Barbies, Having a Tea Party, Painting My Nails, Or Just About Anything Else”, “Things My Mommy Wants To Do With Me, When Daddy’s Not Looking”, to “Places I’d Like To Go To/Visit/See”, “Ideas I Love That Were Sent In By Others” and “The Last Thing I Want To Do”.

Recently, Avery was able to scratch “attend my first baseball game”, “throw out the first pitch at a baseball game”, “throw a strike”, “have thousands of people cheer for me at once” and “shake hands with super hot baseball players” from her bucket list, because for Avery her bucket list achievements are whatever she brings to life because she didn’t have time to wait for life to bring opportunities to her.

The thing is, Avery was just 5 months old – diagnosed with an incurable genetic disease known as spinal muscular atrophy (SMA) Type 1. What this means is Avery was one of 6,000 newborns to contract the debilitating and life threatening disease.

Her parents, Michael and Laura of Bellaire, Texas, first learned the news on April 6, 2012. They were told Avery would lose her ability to walk and move, and would not live past the age of 2. News like this is every parent’s worst nightmare. So what could one family do? They took Avery’s story to the internet and created a blog, written from their daughter’s perspective, sharing playful stories, pictures, updates, information on SMA and a heartrending catalogue of things to accomplish before her life is over, such as “Meet Santa Claus“, “Play a round of golf“, “Go shopping with the girls then come home and tell daddy we spent about half of what we really spent and then hide what we bought under the staircase“… all with one singular focus – to raise awareness of SMA.

For Michael and Laura, the decision to create a blog to chronicling the highlights and milestones of Avery’s life was a means of coping with the hardships of SMA while bringing hope and inspiration to their lives and others like Avery, who suffer from SMA. However, the main purpose of her sharing her story stems from a story of her parents. Both were offered genetic testing, but within those tests, SMA testing was never included. For the two parents, they had never even heard of such a disorder until Avery was 4 months old and her neurologist speculated that she might have it.

Having never heard of SMA before, Avery’s parents turned to friends and family, co-workers and anyone else who would have had some inclination to what this disease was and how it affected their daughter. In their quest to learn more, they quickly realized that not a single person had heard of SMA, including some doctors and nurses.

A little known disease with no cure, a 1 in 40 chance that someone may carry the SMA gene, a 1 in 1600 chance that both mother and father were carriers, and only a 1 in 6400 chance that Avery would be diagnosed with SMA placed her odds in a high favor, but all it took was one phone call to change all of that.

“I was born smiling,” Avery Lynn Canahuati

Never explicitly detailed concerning the hardships of SMA, Avery’s blog focused on the playful and positive outlooks of a five-month-old girl. From her visit to Texas State University, in which her father is quoted as telling stories of the university’s name change beginning with “back when I graduated” only to be followed with Avery’s reply of “OK daddy, we get it, the name changed, you’re getting old, let it go”, to her first kiss, which begins with Avery writing her appreciation towards the interest people have developed with SMA only to be abruptly segued to “… right now SMA’s not even the most important 3-letter acronym I want to talk about, because O-M-G, a B-O-Y totally just kissed me yesterday and he is soooooo cute.”

While many readers assumed it was Laura who was behind the blog authorship, CNN reported it was Avery’s father who took the helm of ghostwriter, placing himself in the perspective of Avery, and writing how she would commentate her life experiences.

With each visit to Avery’s blog, readers are welcomed with touching words of encouragement and education but most importantly is the line,“If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature

Despite Avery having lost the ability to move her legs, barely able to move her arms and requiring her oxygen levels to be constantly monitored, her bucket list quickly grew into a place of inspiration and hope, with many readers offering suggestions of bucket list goals, further evolving into a forum for people to share their stories, hopes and best wishes.

On April 25, 2012, Avery took to her blog and posted her latest goal to raise awareness of SMA. She asked that everyone take to their social networks, twitter and Facebook, and flood Ellen DeGeneres with numerous messages sharing her story on May 1. Using a pre-written message already on the site, Avery asked her followers to help her achieve her #1 bucket list goal of being on the Ellen DeGeneres Show.

However, sad news arose when it was reported that Avery died of pulmonary complications from the disease when her lungs collapsed. Because children, particularly babies with severe types of SMA have difficulty regulating their breaths, they become vulnerable to respiratory complications.

While the news of her passing took the family by shock, Michael continued to update Avery’s blog, writing that the disease never took away Avery’s smile.

In her bucket list of “The Last Thing I Want To Do” the words overcome my illness linger on the blog hauntingly as the sentence below read with a scratched line: But if not, then I’d like to take one last breath, then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents (Tommy, Laura, Jim, Walter, Julia, Joseph, and Audine).

“When I started writing my blog,” Michael wrote as Avery. “I thought I’d only be speaking to my closest friends and family members. Little did I know sooooooo 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.”

Since her passing, Michael wrote in the blog that he made a promise to his inspirational daughter that he would continue to be an activist in raising awareness to SMA, making genetic testing universally available and to continue to support the cause of finding a cure for her friends.

In showing dedicated support, Avery’s blog has since included a new bucket list goal of raising the remaining $365,000 out of $1 million needed to bring Dr. Kaspar’s SMA Gene Therapy program out of the lab and into the public to continue the advancement towards a cure.

To view Avery’s Blog http://averycan.blogspot.ca/

To learn more about SMA http://www.fightsma.org/

To donate to SMA research and help Avery and her family reach their goal http://www.the200forsma.com/?page_id=10

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