I don’t know about you but ever since I have had kids, my ability to well up at every heartbreaking story seems to be on the super sensitive setting. So last night when I read about the bucket list of the five month old Avery Lynn Canahuati’s I felt I had to write a blog about it.
Avery Lynn suffered from the genetic disorder Spinal Muscular Atrophy. The disease affects the motor neurons of the spinal cord and brain stem. Which meant that eventually, Avery wouldn’t have been able to use her arms and neck, and finally, would have been unable to breathe. Though doctor’s said she was unlikely to live past two years, she died unexpectedly yesterday.
Her bucket list, which is detailed on her blog was simple and included things my kids do on a regular basis – play hide and seek, have a tea party with mummy and eat ice-cream. And her blog begins: “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.”
The blog is posted by her parents Laura and Mike Canahuati and their aim was to not only help Avery live the best life she can but also raise awareness of SMA on a global scale because as Mike says, “We’d never heard of this. Nobody we knew had ever heard of this, and yet it’s the number one genetic killer of infants in the United States,”
As a result Avery’s blog has so far attracted over 2 million views in the last couple of weeks. Plus she has 113k facebook followers and 8000 Twitter followers. The Canahuati’s hope is that their daughter’s blog will lead to more funding into research for SMA and routine SMA testing for parents. “If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA” said Avery, “then my life, while cut short in time, will be beyond fulfilling in stature.”