Dear Avery -- In Memoriam
This is Avery Canahuati, born on November 11, 2011. Barely 5 months old on April 11. She was diagnosed with SMA (Spinal Muscular Atrophy), a genetic disorder that attacks spinal neurons and progressively debilitates muscle function. Roughly, her abilities to walk and live a normal life like us, will eventually stop during the next 18 months. I don't want to talk about death, but just 'see you later.' This brought us down to tears, because we lost a baby of our own at 8 1/2 months -- painful memories of placenta detachment (abruption). Yep! Our own blood, had to say good bye, 2 weeks before scheduled delivery.
Unless we find a cure for this genetic disorder (unfairness of life), we will lose Avery. So far she has lost her abilities to sit down and... somewhere down the line, her arms will stop that 'normal and taken for granted' hugs and good byes to mom and dad.
Parents Mike (31), and Laura (29) were carriers of the SMA and they didn't know it. Dad Mike had to blow 2,500 dollars just to find out the sad truth. Technically the insurance didn't cover this disorder's testing since, "you have to know about it to ask for it."
is early morning and not feeling well
the news of you have moved me to
tears and my whole brain
So many worries of our own, and
missing your smile at day's end
Thinking about our own egos
facing a world that is losing itself
precious angel that touched our heart
wish had the power to heal your pain
Easy to say that we are okay
your own little problem is making us think
Mother's day you will be with mommy
and maybe next time you will win your wings
This is so devastating for God's sake
Where is the knowledge that could save your life
Loved to stop wars for a day and see your smiling face
Don't you think, precious thing?
Visit her Blog and stop SMA!
In her own little words...through her dad's blog
- Parents, please remember to help your own kids. Keep them live, laugh, and love them, but more importantly, cherish each and every moment with them.
- 1 out of 6,000 of my friends are born with SMA. So parents, be careful with my little friends.
- This is my Father saying: "We are all born pure & innocent. We can let the world change us, or we can change the world."
- And this really made me cry, even if I will stop smiling one day, unless God wants me to stay: "Take it all, but don't take her smile."
Update: Avery Lynn Canahuati, passed away on April 30th, 2012. Rest in peace little soul!
Avery Bucket List on FaceBook
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