Wednesday, May 2, 2012
Singapore - Couple pen 'bucket list' for their baby with terminal illness
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'.
- 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.