Today is off –topic but it is a story I want to share.
It is about Avery.
Avery is a five-month-old baby girl who was diagnosed with a condition called Spinal Muscular Atrophy (SMA) April 6, 2012.
Here is how her story begins…
“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 die between now and the next 18 months. What would you do? My name is Avery Lynn Canahuati, I’m almost 5 months old, and this has become my reality. But before I die, there’s a few things I’d like to accomplish…this is my bucket list and my story.”
I do not know Avery or her family, nor do I know anyone with this disease, but as a mother, I cannot fathom having my world turned upside down with news that my child will not live to see her second birthday. I know it happens to many parents, in different ways, different stories. Avery’s family, specifically her father, has chosen to be her voice and educate as many people as possible about this disease.
Their blog is an incredible journal written by her dad, Mike. However, it is not in Mike’s perspective. He is her ghostwriter so to speak. This blog is in Avery’s perspective.
Amazingly, the stories are a potpourri of emotions, heartbreaking but also joyful and funny (if you can imagine.) There are a lot of pictures and an incredible bucket list.
That’s right. A bucket list.
A bucket list of 100 to-do’s. Things like:
Be a cheerleader
Go to San Diego and visit the Zoo
Sleep in my mommy & daddy’s bed because I was afraid of the boogeyman in my closet
Go camping & make smores
Get a mani/pedi
Be potty trained
Play hide & seek
Celebrate my real 1st birthday
Go to the movies in my pajamas
Watch the Polar Express
Make a lemonade stand
Go to an Aquarium
Visit where my mommy & daddy first met
Fly a kite
A thought provoking list that, once you read, will have you thinking. About everything.
The purpose of Avery’s blog is to educate people about the disease and with the hope that with education, comes the ability to find a cure. Knowledge is power.
I encourage you to go over and spend some time reading what Avery has to say, through her father’s words.
Sadly, Avery passed away on Monday. Here was part of the announcement made by her 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…”
Please visit Avery’s blog to read her final words.
This is Avery just 15 minutes before she passed.
In her father’s words, SMA did not take her smile away.
I so wish I would have published this post before today. Even so, I decided it was still important to post it after her passing and ask that you all take a moment to readAvery’s story and then, perhaps, share her story on Facebook, Twitter or other social media formats in her memory and for others who suffer from SMA.