What do you do when your 6-month-year-old
daughter is diagnosed within incurable genetic disease, and will very likely
not live long beyond her second birthday?
For
Mike and Laura Canahuati, they chose to write a blog in her name - detailing
their daily joys and trials with her, accompanied with a 'bucket list' of
things to accomplish before her death.
Baby
Avery was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 on a Good Friday,
June 4, 2012.
This
means that little Avery, who has already lost her ability to move her legs,
will eventually lose the ability to move her arms and her head.
When
this happens, it will become increasingly difficult, and in the end impossible,
for her body to pump air through her lungs.
This is
why most babies diagnosed with SMA Type 1 have a life expectancy of less than
two years of age.
There
is even the possibility of dying a few months or even weeks after birth. Even
with the help of a respirator, life expectancy can only be stretched till ten
years of age.
One in
6,000 babies is born with one of the four types of SMA, with Type Zero the
worst. However, that usually occurs with fetuses, the couple said.
Much of
the blog, written in the first person in Avery's voice, is the work of the
father, Mike.
He
writes: "My mommy, daddy, and grandparents have chosen to help me fight
this disease, while embracing this news and helping me chronicle my
"bucket list" experiences through this blog.
"So
at this point, my family & friends can either sit back and watch me die and
let my life be about doctors visits and tear filled days, or everyone can
embrace what my future holds and we can make each day I'm here a memorable
one...starting now."
Light-hearted
and humorous, the blog and the bucket list is written as though Avery will live
far beyond her estimated life expectancy and experience life's milestones.
In her
wish-list, 'Avery' writes her hopes of 'attending a sleep over', 'going
hiking', to 'play dress up in my mommy's closet and have a photo shoot' and
'celebrate my real 1st birthday'.
Others
include:
-
Lose
my first tooth and get a present from the tooth fairy
-
Meet
Santa Claus
-
Dress
up for Halloween and go trick or treating
-
Get
a tattoo
-
Have
a father daughter dance while watching Father of The Bride
Hopes and dreams
Since
the 31-year-old first time father started penning the blog for his daughter,
the blog has gone viral, accumulating more than a million page views and
counting.
"Today
started like most days, I woke up, ate breakfast through my glam-tube, took a
bath, and then checked my blog to see if anyone is reading my story and helping
me spread awareness about SMA.
"Well,
when I woke up yesterday I had 480,000 pageviews and as of right now I have
1.29 million pageviews (and that number is increasing by about 2.5 pageviews
per second).
"Holy...Shitake
mushrooms??? Umm, I'm not certain, but I believe they are with the rest of the
produce sir. Ugh sorry, do I look like work here? Anyway, where was I?",
reads one of the latest entries.
Mike,
an insurance company owner, says he conjures up a little girl's perspective
when he writes. He added that many people are surprised to find out it's the
dad, not mom, typing out the sensitive tear-jerker entries.
The
couple first began the blog as an efficient way to keep family and close
friends in touch about little Avery's health.
In each
post, they include a plea for readers to share Avery's story in the hope of
spreading SMA awareness.
In her
voice, they call on couples to get SMA testing, and medical organisations and
insurance companies to offer SMA testing, so nobody has to go through what
Avery's family is going through every day.
"The
only way to do this is to make people aware of SMA so they know they have the
OPTION of getting tested for it. That's all I want and that's all my mommy
& daddy want for me and all of my future friends," 'Avery' writes.
The
list began as the wistful imagination of Mike and Laura living out a normal
life with Avery through her teenage years and beyond, wishing for her to try
cupcakes, fly a kite and blow bubbles.
But
slowly, emails started pouring in with people asking them to add things into
the list.
Crossing
items off the list
Others
offered help for the Canahuatis to strike off items from the list.
To
date, Avery has gone on a road trip, been a cheerleader, had a birthday party,
driven a car, and opened a birthday gift from a stranger.
In
April 2012, Avery even got to throw the first pitch at a Sugar Land Skeeters
baseball game.
During
the game held in honour of SMA awareness, Mike got to strike off several more
items off the list, including:
1. Go
to my first baseball game
2.
Throw out the first pitch at a baseball game
3.
Throw a strike...whatever that means
4. Have
thousands of people cheer for me at once
5.
Shake hands with super hot baseball players
6. Meet
some of my SMAns"
Mike
says there is no rhyme or reason to him writing in Avery's perspective.
He told
reporters that he doesn't know what it is like to be a little girl, but draws on
his experience having "a bunch of sisters."
He is
the single son in a family of three older sisters.
Despite
the cheery picture the posts paint, the Canahuatis had a difficult Easter
weekend when they tried to come to terms with their baby's fatal disorder.
Laura
said the family sat around for two days crying and "being
devastated".
Nothing they can do
They
had to absorb the cruel news that there was no cure and absolutely nothing they
could do to help her. They had to accept the fact that Avery's fate was out of
their hands and not within their control.
Besides
the blog, there is a Facebook page and Twitter account encouraging couples to
get tested on whether they are carriers of the SMA gene.
SMA is
the top genetic killer of infants and children under the age of two. However,
most people remain ignorant of it and medical institutions rarely offer tests
for it.
According
to the couple living in Bellaire, Texas, near Houston, it's not even included
when performing genetic pre-screening tests for other potential diseases and
disorders.
And
while some insurance companies cover the testing costs, others don't.
One in
40 people are carriers of the SMA gene. Meaning that each couple has a one in
1,600 chance of both having it, and a one in 6,400 chance that the baby will be
born a sufferer.
Laura,
29, a kindergarten teacher, has taken a leave of absence to care for her
daughter and deal with the occasional medical frights.
On
April 26, the couple had to send Avery to the hospital when her oxygen levels
and heart beats per minute went 'crazy', triggered by milk being fed to her too
much and too fast.
All the time in the world to cry when it's
over
This
caused major reflux issues and affected her swallowing and breathing.
However,
the Canahuatis, in their signature optimistic style, took the best view of the
situation, writing that Avery "got to ride in an ambulance with two
muscular firemen who wouldn't take their eyes off of me."
"I
try to keep it as fun and lighthearted as possible within the realm that this
is serious," said Mike, in an attempt to make people understand what is
SMA and what everybody who loves Avery is going through.
"It's
making people realize, 'Hey, my life is not that bad, I need to go hug my kid
and I need to do something nice for my wife or my kid,'" he said.
Born on
November 11, Avery has about 18 months more left for her to spend time with her
loved ones.
Her
legs have been rendered immobile, and her arms are showing less movements each
day.
Her
mother said for now, they will enjoy each moment they have with her in
happiness, instead of choosing to cry all day.
"We
have all the time in the world to cry when this is over," she said.
AsiaOne
No comments:
Post a Comment