Op-Ed: Heartbreaking bucket list for 5-month-old Avery Lynn Canahuati
Five month old Avery Lynn Canahuati's bucket list is a simple one. Play hide and seek, and eat ice-cream. Avery isn't expected to live past the age of two, but her parents and Avery, are not sitting idle.
Avery's heartbreaking blog
"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."
Of course little Avery didn't really post this, her dad Mike Canahuati did ... for Avery.
Born last November in Bellaire, Texas, Avery's parents received the devastating diagnosis just before Easter, that their daughter was suffering with a genetic disorder called Spinal Muscular Atrophy Type 1 or SMA. SMA Type 1, also called Werdnig–Hoffmann disease, is the severest form of the disorder, with infants rarely surviving past the age of two years. And at just five months old, Avery has already lost the ability to move her legs.
According to Fight SMA.org
, SMA is the leading genetic cause of death in infants and toddlers. The disease affects the motor neurons of the spinal cord and brain stem. Eventually, Avery won't be able to use her arms and neck, and finally, will be unable to breathe.
But the battle with SMA it seems, is getting a diagnosis. The organization said:
"Despite the fact that SMA was described many decades ago, there is still a great deal of confusion among patients, parents, and physicians as to the diagnosis, treatment, and genetic counseling which should be provided for those affected with this disease."
Still, Avery and her parents are poised to change all that. During an unimaginably dark period, when any parent would readily crawl into a closet and slam the door, the Canahauti's have thrown theirs wide open, allowing Avery to bask in the sunlight and raise awareness of this insidious disease that could rob them of their daughter.
Avery, in just five months, has accomplished more than most of us could dream to achieve in an entire lifetime. She wanted to teach the First Family but "hopefully not the last, about SMA." The get well soon card and picture from President Obama and his family is on Avery's blog. Mission accomplished.
The infant also wanted to, "Build something with my daddy." And she did; a Radio Flyer stroller which she adds her Dad "Messed up, because there is no radio and it doesn't fly."
From throwing the first pitch at a baseball game to flying a kite and eating ice-cream, the five-month-old little girl with her brave parents' help, is crossing things off her list at a rapid rate.
But Avery's biggest bucket list wish, is raising SMA Awareness on a global scale. And she hopes "a song daddy started singing to me the day he met me," will lead the way. The song, Avery said, is called "Wavin' Flag," and she wants it played:
"Whenever my journey here on Earth is over, which will hopefully be many many years from now. And on that day, as my daddy's song plays for me, I hope people from all walks of life will line the streets and wave their flag for me and all of my friends (past, current, and future) in support of SMA Awareness!"
Avery's blog has attracted over 2 million views in the last couple of weeks, and the Canahuati's hope is that their daughter's story will lead to 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."
Follow Avery Lynn's bucket list endeavors at her blog
, on Facebook
and follow her on Twitter