In life we always have a choice. For Avery Canahuati and her family the choice was simple, they chose to live.
Avery was diagnosed with an extreme form of SMA of Spinal Muscular Atrophy. It’s a rare genetic disease that robs the person of his abilities. From walking, moving all the way to breathing. In Avery’s case she was not expected to live past 18 months.
It’s hard for any parent to accept that their child will die so young. A parent should never have to bury their child. Yet given this dire situation, Mike and Laura Canahuati, Avery’s parents decided that they would choose to live rather than focus on Avery’s death. “Mike always told me that we’ve got all the time in the world to cry. We can cry, you know when she’s no longer here” Laura was quoted as saying during an interview by CNN.
This approach to a situation such as Avery’s is amazing and uplifting. They know the outcome. They know that eventually Avery will die. The question is should they focus on the death or should they make the most out of their time with their daughter. They made the conscious decision to let Avery live as much as they can.
Mike and Laura set up Avery’s blog to chronicle not just her fight with SMA but also to chronicle her life and memories. They made a bucket list of the things Avery was able to do during her time here on Earth.
Avery was able to do things like:
- Watch a baseball game
- Throw the first pitch
- Open a birthday gift from a total stranger
- Receive a get well card from Pres. Obama and family (Wow!)
- Build something with her daddy
- Play with a pinwheel
- Mold her hands for mommy & daddy
- Get her first tattoo (relax it’s a stick-on)
- Get 1,000 smiles mailed to her
Those were just a small fraction of what she was able to do in her short life. Amazing don’t you think?
Avery passed away last April 30, 2012. After a short but well fought battle with SMA. Sometimes it’s not the outcome of the battle that’s important but how you fought it. Avery might be gone but her memory lives on. In her short life she has brought attention to SMA in a big way. A lot more people know about SMA because of her blog and the media attention she got from it.
In life, it’s not how long we live that matters in as much as what we do with our time. Avery and her family has done so much in her short time on Earth to help contribute towards a worthy cause. Her life mattered.
I’ve said it before that the main reason I wrote and continue to write on this blog is because I wanted to create awareness for Pompe disease and other rare diseases. I am inspired by Avery’s story and vow to continue spreading awareness for rare diseases.
SMA is also special for me because the son of a good friend of mine also has it although in a milder form. I’m hoping that a cure can be found for SMA that will allow patients to be cured and live long lives.
Visit the following: