Let me start over...Avery has SMA. This is a genetic disorder that is somewhat common (compared to other syndromes and disorders), though so many people have never heard of it, including me, until today. 1 in 40 people are carriers of the SMA gene. If two carriers have children, their children have a 25% chance of having SMA. The sad part...genetic testing could inform parents of this chance, though it is not a routine test that is administered. Rather, carriers have a child and, after the fact, learn that their child will only live a very short life. The purpose of Avery's blog is to inform others and raise awareness. Thus, I am trying to do just that for Avery.
Here is a synopsis of what Avery has to say...
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!The entire blog is written from the perspective of sweet Avery. There are multiple posts about her health, condition, and what she has gone through in her short life. There are more posts about her "bucket list." Her strong, courageous, brave, and LOVING parents have made it their mission to make sure her life is full and prosperous. Avery has accomplished so much in her short life, and it's captured through the blog. PLEASE...take a moment to check it out.
Here's the part that simply killed my happy spirit today...after I took my students to lunch, I took a moment to check my email, follow up on paperwork, and check Avery's blog to see if any new posts had been added. There was a new post entitled, Avery Lynn Canahuati 11/11/11-4/30/12. That's right, Avery passed away yesterday. A 5 month old little girl that has done nothing wrong in the world, passed away after living with a disorder that impaired her life. So often, at times like these, we wonder, how could God do this? I know it's not enough to say that my heart was touched by sweet Avery, but perhaps that is what God was doing. Millions of people from countries around the world have been touched by Avery's story, and I hope you will be too.
Take a short time to see her sweet face, hear her sweet voice, and take in her sweet smile. Pray for her family. Remember to take time to love your own family. Watch your children grow, thrive, learn, and play. Feel their arms around you. Feel their kisses on your face. See their smiles as they wake each day. And know...Avery's parents have all of those things in memory. They don't get to do those things anymore. BUT...Avery is waiting patiently, happily, and courageously in Heaven.
I had planned to post about Bentley tonight. I wanted to give you all the latest stats, tell about his new accomplishments, and fill you in on the my sweet baby. Rather, though, I will save this post just for Avery. She deserves it. If I can help her to raise awareness about SMA and have at least one more person feel as touched as I am about her story, that's all I can hope for.
Avery Lynn Canahuati
She did not let SMA take her smile away.
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