Avery Lynn Canahuati 11/11/11 - 04/30/12

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...

Dear Mommy & Daddy:

If you're reading this it's because I've gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents.  I love you veeeeeeeeeery much.  Also, tell Nana & G-Pa I love them too.  In fact, tell everyone who loved me that I love them and I appreciate them caring about me.

When I started writing my blog, I thought I'd only be speaking to my closest friends and family members.  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.

You see, I'd never heard of SMA prior to being diagnosed with it, yet there's thousands of my friends out there living with it today and millions of my future friends parents who are unknowingly carriers of the SMA gene.  Without awareness and without a cure, I'm afraid more of my friends are at risk to have their lives drastically shortened by SMA.

When people think of me, I hope they'll also think of all my friends who have been through this and who are going through this now.  But what I really hope for is that when people think about me, they will not waste time sitting there feeling sorry for me, rather I hope they will STAND UP in honor of me and all of my friends (past, present, and future).  And they can do so by spreading awareness and helping to fund a cure for my friends.

To all my SMAns, you followed me, now please follow all of my friends.  

Mommy.  Daddy.  I love you every bit as much as you love me.  And while I'm not here physically, I will forever live in your minds, as you will mine.

Love always,

Avery, Aviator, Aves, Scuttlebutt

Also, before Avery passed away, I made her a promise that I would continue to be an activist in raising SMA awareness, making genetic testing universally available, and in finding a cure for her friends.  I will not break that promise and in the name of SMA awareness and funding a cure, I hope parents of children everywhere will look at Avery's Bucket List and help her complete items she was unable to.  And when you do, take pictures and send them to Avery's Bucket List so we can show the world and continue to share Avery's message.

One of Avery's newest Bucket List goals was to help raise the remaining $365,000 (out of $1mil) 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 could cure Avery's friends or at the very least offer advancements towards a cure for them.

Click here to donate to Dr. Kaspar's SMA Gene Therapy through Sophia's Cure which is a non-profit organization so all donations are tax deductible.

Once that goal has been achieved, Avery asks that all monetary donations at this time be made in her name to Fight SMA (www.fightsma.org).


Here's the last picture we ever took of Avery.  It was taken approximately 15-20 minutes before her lung collapsed and she went into cardiac arrest.  She was sitting on her mommy's lap looking at me and all it took to get her to smile this big was for me to keep saying "Hi".

SMA, you did not take my smile away!

THANK YOU TO EVERYONE FOR LOVING AVERY, SUPPORTING US, AND HOPEFULLY FOR CONTINUING TO SUPPORT AVERY'S FRIENDS WHO ARE STILL OUT THERE!!!

Items I Can Scratch Off My Bucket List:

1. Not let SMA take my smile away

2. 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).

Up Next:
...I found a few archived blogs that Avery never posted...give me some time and I will share them as well as many stories of other children with SMA (past & present).

Don't forget to share my story by following & forwarding my blog, following me on Twitter  (AveryBucketList) and Like Me on Facebook (Averys Bucket List)!  While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!

http://www.facebook.com/AverysBucketList

https://twitter.com/#!/AveryBucketList

If you feel comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:

Fight SMA (www.fightsma.org)

Cure SMA (www.curesma.org)

Sophia's Cure (www.sophiascure.org)

Thank you!