Avery's Celebration of Life

SMA ended Avery's life, please don't let it end her story.  Each time I post an update, please share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.  And to all of Avery's girlfriends out there, tell your Ob/GYN about Avery's story and maybe they'll routinely start offering SMA testing.  If we can help save a few of Avery's future friends and their mommy, daddy, and loved ones from SMA, then Avery's life, while cut short in time, will be beyond fulfilling in stature.  

Thank you to everyone who was able to be a part of Avery's celebration of life this past weekend.  For those of you unable to attend, we know you were there in spirit and we appreciate your continued love for Avery.  After the service, numerous people approached me and told me it was probably the most inspirational and moving moment in their lifetime.  The fact that Avery can continue to inspire people even after she's passed...I don't even have words to describe how it makes me feel.

Avery's celebration of life went exactly as envisioned.  From the words being shared, her song being played, flags being waved, the balloon release, and the police shutting down major highways to get Avery to her final resting place, it was all just a truly touching experience and in my opinion an appropriate send off to an amazing little girl.

Below is the eulogy I delivered to the attendees at Avery's funeral:

11 Years ago when my mom died from cancer, I stood before her loved ones and I uttered the words, "Let's be happy for her now, as she was never going to get her life back.  There will be plenty of time for us to be sorry for ourselves later, but for now, let's just be happy for her."

Today as I stand here in front of all of Avery's loved ones, I cannot utter these same words to describe how I think we should all feel.  Not because I don't believe we should all be happy now and sad later, but because I believe Avery lived the only life she ever knew and she did it very well.  Avery showed us what it means to be courageous, she showed us what true love is, and she taught us many other lifelong lessons.  And even in her darkest minutes, as she was being rolled into ICU, she looked up at her nurses and she reminded all of us how to keep smiling.  So as I stand before you, I will tell you that if I shed a tear today, it's not a tear of sadness for my daughter's passing, rather it's a tear of pride for what my daughter accomplished in her living.  Simply put, Laura and I are the proudest parents in the world right now.

Before I share one of Avery's final messages to us, I want to share with you a few comments from other parents within the SMA community.  Some of these are parents within the SMA community who have started non-profits to help bring forth awareness & funding for a cure for SMA.

Avery, to me you will always be our most famous SMA celebrity.  You didn't charm the world with your song, or dance, neither with your poetry or prose.  You charmed an entire planet just because you existed.  Your sole essence as human inspired and changed the heart of MILLIONS.  I don't know of any other kid in history that in such short age transformed minds, perspectives, visions of life and dreams of so many.  You are genuinely unique.  Thank you for being part of my life.  You definitely affected change in an unprecedented, yet wholeheartedly manner.

Donations are coming from Avery’s hometown in Houston to Mexico, to Columbia to Australia to The United Arab Emirates.....AVERY has circled the globe and has taught the WORLD about SMA.... I have prayed every night for this kind of awareness.  With tears in my eyes I am in Awe of Avery.

Avery and your family have touched millions around the world, raising incredible awareness of SMA and reminding us all to cherish every second and live every day to the fullest.

Avery your impact is miraculous.  What made your message so poignant was the way you presented your story and your journey through this disease. In an almost unfathomable way you took the most darkest, ugliest thing imaginable and miraculously delivered it in a light hearted way. THAT is what the world connected with. That is why you changed this disease. That is why you were able to accomplish what nobody else has ever even come close to accomplishing. 

Avery, I will never let the SMA community forget what you did for them EVER...NO One has ever done this and for as long as I live, the community will know what you have done Avery.  We have all been praying for a break for so long, thank you Avery for your bravery.  I am forever in your debt.

Here is Avery’s letter…

Dear Mommy & Daddy:

If you're reading this it is because I've gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents.  I hope you know that 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.

Daddy, remember how you used to tell me that writing stories was a lot easier than giving speeches, but you hoped one day I'd be strong enough to give a speech?  Well since I'm not here to give this speech I hope you can remember the advice you gave me and just imagine everyone in the room is in their underwear.  First of all, ewwwwwww.   Secondly, sorry to ask this daddy, but by any chance is Dr. McSteamy, any of the Bellaire Fire Dept, or my catcher friend Octavio Martinez here today?  If so, hubba hubba hubba.

Annnnnnnnnnyway, like most of you, I'd never heard of SMA prior to being diagnosed with it and I don't think SMA had ever heard of me either.  But now that we've become better acquainted, I hope to do to SMA exactly what SMA has done to me.  And I hope my daddy was right when he'd say to me, "Don't worry Scuttlebutt, we'll make sure one day that SMA stands for Shoulda Missed Avery."  And 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 people will STAND UP in honor of me and spread awareness to prevent this from happening in the future while at the same time helping to fund a cure for my friends already going through this.

Before I conclude, I want to say thank you to everyone who helped me through life and who loved me.  Please know that I hope I was able to help you and that through each of you I will continue to live.  And to all my SMAns, you followed me, now please continue to follow all of my friends!   

In conclusion, 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.  Mommy please take care of daddy.  Daddy please take care of mommy.  And before I say my final goodbye, there was one thing I waited to add to my bucket list until I felt the time was right.

I want to be a big sister someday.

With all of my love,

Avery Lynn Canahuati

Needless to say, Avery inspired Laura & me like we’ve never been inspired before.  Her beautiful blue eyes lit up our house and her smile engulfed every emotion in our bodies.  Her presence on Earth while short in time, will be fulfilling in stature and everlasting in our memories.  We want to thank you again for accepting Avery into your lives while she was here and for letting her live through each of us now that she is gone.  We sincerely feel the love and support and we know from what you all have told us that Avery has made an impact on each of your lives as well as millions of lives around the world.  I leave you with this…

“There’s nothing we control in death.  But we control everything in life.”

Make the best of yours.  If not for yourself, please do it for Avery.

Thank you.

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 be made in her name to Fight SMA (www.fightsma.org).

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

Items We Helped Avery Scratch Off Her Bucket List:

1. Celebrating her life to the fullest

2. Shutting down two major highways in Houston (sorry!!!)

Up Next:
Whatever I bring to life, because I just don't have time to wait for life to bring things to me.

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!