Tuesday, December 3, 2013

Avery's Little Brother (Carter Bryant) Born 11/23/13

Avery officially became a big sister to an SMA-free baby brother on Saturday, November 23, 2013.  We are extremely proud to welcome Carter Bryant Canahuati into our family while helping Avery scratch one more item off her list (Become A Big Sister)!
Mommy, Daddy, Carter and big sister Avery moments after Carter's arrival.





Yeah little buddy, we imagine somewhere your big sister
Avery is smiling big too!
Thank you again to everyone for loving Avery and continuing to care about our family.  If you haven't done so today (or in a while), tell someone you know about Spinal Muscular Atrophy (SMA) or reach out to an SMA family in your area and ask what you can do to help them...you never know how it might positively impact their lives or this disease.

To learn more about SMA or to make a donation towards research for a cure, please go to either of the following non-profit websites:http://www.fightsma.org/




Thursday, October 10, 2013

Avery's Lil Brother (Maternity Pics)

Thank you Paperhearts, Photography by Jessica Laviage for capturing this moment in our lives and for your kind words.  I think Laura said it best when she said, "I don't think of myself as a hero at all, just a mom with a precious little girl"...and in 7 weeks (give or take), a precious little boy too.









Thank you again to everyone for loving Avery and continuing to care about our family.  If you haven't done so today (or in a while), tell someone you know about Spinal Muscular Atrophy (SMA) or reach out to an SMA family in your area and ask what you can do to help them...you never know how it might positively impact their lives or this disease.

-Mike & Laura, aka Avery & Carter's Mommy and Daddy-



Thank you again to everyone!

Friday, September 20, 2013

FDAvery Approved!!!


The FDA has approved Dr. Kaspar's Gene Therapy program!  
We would like to say thank you to Dr. Kaspar and his team at Nationwide Children's Hospital, along with Sophia's Cure Foundation and numerous other families of children with SMA for working vigorously towards making this day become a reality.

We would also like to thank everyone who followed and supported Avery and donated to Dr. Kaspar's Gene Therapy program.  We hope you'll take a few minutes today or this weekend to celebrate this accomplishment while continuing to spread awareness about SMA!


Lastly and most importantly in our humbly biased opinion, we would like to give special thanks to our amazing daughter Avery for inspiring us and countless others.  We ever so dearly love you and we will forever miss you.

We will finish this post with an adorable and amazing video from the Gaynor family (Founders of the Sophia's Cure Foundation) announcing the FDA's approval.


Even though Avery is no longer physically with us, please don't forget there's plenty of children and others living with SMA, so please share Avery's story by forwarding her message to your friends & family members!  The more people who are aware of SMA, the less likely future children will be diagnosed with SMA!


Thursday, May 30, 2013

For Avery's 2nd Birthday...



I Think We'll Make Her A BIG Sister!

Avery's lil' sibling due in November 2013


Avery aka "Big Sis" at 1 Day old.  
Thank you again for loving Avery and for your immense support.  We ask that you please continue to share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.   The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA! 


Saturday, March 23, 2013

Excellent news in the fight against SMA!


Families of SMA and Nationwide Children's hospital have agreed to a 3-year cooperative agreement in the amount of $3,752,462 to help further fund pre-clinical drug development of Dr. Brian Kaspar's Gene Therapy program. 

Press Release from Families of SMA:

http://www.fsma.org/LatestNews/index.cfm?ID=7638&TYPE=1150

If you would like to make a personal contribution towards Dr. Kaspar's Gene Therapy program you may do so through Sophia's Cure Foundation.  Thank you as always for your continued love & support of Avery and all of her SMA friends & their families.


Pictured (from left to right) at Dr. Kaspar's labs in Nationwide Children's Hospital: Avery's friend/donor, Avery's Dad & Mom, Dr. Brian Kaspar, & Sophia's Dad (Vincent Gaynor). 
Please continue to share Avery's story by updating your social networks, e-mailing all of your
contacts, and talking to your friends/co-workers.  
 The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA! 

Saturday, March 9, 2013

Help Families of SMA

Please continue to share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.   The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA! 

After Avery's diagnosis, Families of SMA sent her a care package that included many amazing things to help us get Avery around comfortably and keep her entertained. Items from FSMA pictured w/Avery include her radio flyer wagon which allowed her to breathe comfortably while we took her on walks, a lightweight cat ball which unlike other toys, Avery was able to grip and lift, and her pinwheel which she wouldn't take her eyes off of. 
You can help Families of SMA (Florida chapter) by buying this $10 Groupon:


http://www.groupon.com/deals/greater-florida-chapter-of-families-of-spinal-muscular-atrophy

For every 30 donations, two newly diagnosed families will receive extremely helpful care packages. 
Thank you as always for your continued love & support of Avery and all of her friends with SMA.






 Don't forget to share Avery's story by following & forwarding her blog, following her on Twitter (AveryBucketList) and Like her on Facebook (Averys Bucket List)!  The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!