Why does 5-month-old Avery Canahuati have a bucket list?

Baby Avery Canahuati of Avery's bucket list

I am a father of a little girl and let me tell you when I read the following quote from Michael Canahuati from Bellaire, Texas I had to step outside and gather myself:

“When they tell you your daughter will most likely die within the next 18 months of an incurable disease, that there are currently no clinical trials for, and that it’s the number one genetic killer of infants, it pissed me off.”

My wife and I find ourselves constantly thankful for our daughter’s health while wondering how parents in these impossible situations cope. I honestly can’t say how I would handle it, but I can guarantee you that Michael and his wife Laura are examples of the bravest type of people I can think of. Sure they’re pissed and devastated and hurt but they’re also trying to make a difference and if this write up helps their mission in the least I’m more than glad to do my part.

Baby Avery Lynn Canahuati (photo above via Twitter) is now 5-months-old and has been diagnosed with spinal muscular atrophy, SMA Type 1. Via the SMA Foundation:

Spinal Muscular Atrophy (SMA) is a genetic neuromuscular disease characterized by muscle atrophy and weakness. The disease generally manifests early in life and is the leading genetic cause of death in infants and toddlers. SMA is caused by defects in the Survival Motor Neuron 1 (SMN1) gene that encodes the SMN protein. The SMN protein is critical to the health and survival of the nerve cells in the spinal cord responsible for muscle contraction (motor neurons).

Little Avery has already lost use of her legs and she’s beginning to lose strength in her arms. As this horrible disease progresses the atrophy is expected to eliminate her ability to breathe. Here is a video report filed by KHOU out of Houston:

What Michael and Laura have decided to do is to make every moment count and to put Avery’s story out there to draw attention to the disease in hopes that someday other parents and children will not have to go through this same unthinkable ordeal.

Michael said:

“We can sit at home and we can cry every single day, or we can try to make memories with her. We can watch her die, or we can let her live. And through letting her live we’re going to try and educate other people about this so they don’t have to go through it too.”

The Canahuatis have created an online blog, a Twitter account as well as a Facebook page that chronicles the moments that Avery has in the short time she’s been given. Here is the introduction that helps explain the family’s mission via Avery’s blog:

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. SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

In a recent post via the blog the family shared a video of Avery getting a bath. The blog is written from Avery’s point of view, so here’s what she had to say about it:

My mommy made a new friend named Courtney whose daughter Kaitlin had SMA Type 1 like me.  Courtney told mommy that she used to put Kaitlin in the bathtub because it took this thing called gravity away and would allow Kaitlin to move her arms and legs better.  OMG, thank you Courtney for telling mommy about this because I had soooooooo much fun…

And here’s the video:

Here are just a few items Avery has scratched off of her bucket list:

1. Getting grounded
2. Teach my daddy the definition of grounded
3. Ignore my parents while watching TV
4. Meet my new medical team
5. Get proposed to by a doctor (you see it your way, I’ll see it mine)
6. Find doctors who show emotion
7. Lick my first cake ball
8.Get a dozen pink roses in the mail

Laura summed it up by stating, “We didn’t sit down and cry that day. We sat there and we made memories with our daughter.”

If you’re interested in helping spread Avery’s story and message here are the links again:

BLOG: http://www.averycan.blogspot.com/

TWITTER: https://twitter.com/#!/averybucketlist

FACEBOOK: http://www.facebook.com/AverysBucketList

UPDATE: Avery’s father has posted that she has passed away on 4/30/11. Our hearts are broken… Here is Michael’s post:

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.

There is one last letter from Avery and I encourage you to go to the blog link above to read it and reflect.

Thanks to our reader Ashley for letting us know about Avery.

  • brittney

    i never post on this website but i do come here alot and this has made me break downa nd cry in pain for this family since they cannot cry now. I cried in joy for me having a healthy baby and thanked the lord for the gift i have received in this life. God Bless to Avery’s family. Let the lord be with them <3

    • Starcasm Staff

      Thanks for sharing Brittney – It was another reader who brought it to our attention. It’s how Avery’s story can get out there and make a difference.

  • ER

    Oh man this was a bad starcasm story to start the day with! My 4 months pregnant self cried like a baby. Thank you for posting this Starcasm. What an inspirational family- Avery is clearly a trooper and I admire the strength her family has in dealing with this. God Bless Them!

  • Steph

    I could never imagine a doctor telling me that I was going to lose my son. They are STRONG people, and they will be in my thoughts for sure.

    Beautiful story.

  • Sara

    Wow that is one strong family and one BEAUTIFUL little girl! I spent my whole pregnancy scared to death that my son would have cancer because I have a gene that causes it. I got lucky and he was born healthy and I didn’t pass the gene on. But I don’t know if I would have had the strength they have if my son would have been sick. I am glad they are making precious memories with her!

  • Pam

    This is such a heartbreaking story. As a parent I can’t begin to even imagine what this family is going through. God bless them and their sweet little girl!

  • Ashley

    Thank you for posting this Starcasm!!! What a great post and the least any of us can do to help spread awareness. Avery and her family truly are the definition of bravery, hope, and gracefulness. Thank you again for posting!!!

  • Jenny

    Thanks for sharing this story, Starcasm! It is so great to see the parents making the most out of the time that they have with her instead of feeling sorry for her and for themselves. It reminds everyone to make the most out of every day they are lucky enough to get.

  • helloisitme

    her parents are incredible.

  • Neacy

    People say they cannot imagine what their lives would be like or how devastated they would be if they were told their child only had a small amount of time to live but these parents are strong, inspiring, and admirable… They are not letting it impact their lives they see that they have their whole long lives to do that. They heard the news and their thoughts weren’t ‘what am I going to do without her’ but ‘how are we going to give her the best short life possible’. These parents are amazing individuals. My prayers are with their family and little Avery.

  • Punkin003

    Wow, what an amazing and truly inspiring story. It really puts a different perspective on our own lives. My heart and prayers are with precious little Avery and the awesome parents she was given. Avery I hope you are the happiest little girl, you certainly deserve it. My wish is to keep a smile on that beautiful little face. Best wishes to Avery and her family.

  • Chantel Nicolee

    I cried reading Avery’s story…I couldn’t imagine knowing anyone who has to go through something like this with their child… My mom is 44 years old and she gave birth to my little brother in December and I was worried that she would lose him . I hope that word spreads about this beautiful little life.

    • mamash

      Chantel you’re a stupid mutt

  • amos

    Im felt sad about that and if i had money i would help her!!!:-(

  • http://youtu.be/oJNVfTbzbl0
    the above is how I feel for your family and beautiful daughter

  • Chantel Nicolee

    I just wanted to post and let everyone know that Avery passed away yesterday afternoon… her family has posted it on their website.

    • jayhellokittykickyerass

      stfu chantel

  • It’s okay

    Rest in peace baby Avery. Your parents loved you so much.

  • Lee

    Bye bye, precious, gorgeous baby girl. I wish you could have gotten to live 100 years. I am a man but this saga has drawn some tears from me. The videos and photos are so touching. And see the final photo, taken 15 to 20 minutes before she suffered a collapsed lung and then went into cardiac arrest: She was in her mother’s lap with a big smile on her face! Clearly these fine parents deeply loved this little girl and she naturally felt that love. I am confident that, for the extremely short life she had, these parents gave her the best she could be given. God bless them all.