A 6 Month Old's Bucket List

Does the name Avery Canahuati mean anything to you?  It will by the time you finish reading this post.  During a break in between projects at work today, I skimmed my usual news sites and landed on the story of Avery.  Since genetic testing is so near to my heart as a MTM carrier, this story sucked me in from the beginning.  Such a precious face, beautiful smile and courageous parents.

Baby Avery

Avery was born with spinal muscular atrophy type 1, a condition detectable by genetic and newborn testing.  Avery's Dad, Mike, who writes Avery's Bucket List in her voice (clever and touching) explains in one post that he and wife Laura were never told about SMA and the option to test before conception or in early pregnancy. Since Avery's diagnosis, it's been their mission to spread awareness about SMA.  Their story is moving, and it is ours to share.

Here are some activities Avery was able to cross off her bucket list before she passed away yesterday:

     - Not let SMA take my smile away (there is a picture on the blog of Avery smiling 15-20 min before she passed)

     - Wrap my arms around my Daddy

     - Stay up past my bedtime
     - Reach my 5-month birthday
     - Wear Mardi Gras beads
     - Wake up smiling
     - Have a bad hair day
     - Pass out on the couch watching infomercials
     - Move my legs for Mommy and Daddy

Many posts ended with UP NEXT: "Whatever I bring to life, because I don't have time to sit back and wait for life to bring anything to me." What a message.  RIP Avery.