Avery’s Bucket List After Being Diagnosed with Spinal Muscular Atrophy Type 1

ad1

Spinal Muscular Atrophy

Updated Story: Baby Avery Died From Cardiac Arrest on Monday

Mike and Laura Canahuati created a blog about their 18 month old daughter, Avery who was diagnosed with spinal muscular atrophy Type 1, also called Werdnig-Hoffman, a disease that destroys spinal neurons. Avery has already lost the use of her legs and she is beginning to lose control of her arms, and may eventually lose the ability to breathe. Doctors have only given Avery 18 more months to live.

What is spinal muscular atrophy? On Avery’s Bucket List blog it states: SMA is the #1 genetic killer of infants & children under the age of 2, yet most people have never heard of it, most OB/GYN’s do not offer tests for it, and it’s not included when performing genetic pre-screening tests for other potential diseases & disorders. There is currently no cure and it attacks the muscles which causes inefficiency of the major bodily organs – especially of the respiratory system – and eventually leads to death. 1 in 40 people are carriers of the SMA gene. Meaning my mommy and daddy had a 1 in 1600 chance of both having it and even then there was only a 1 in 6400 chance I would get it. SMA attacks muscles and is completely physically debilitating, it does not attack the mind or cognitive skills.Avery's Bucket List

There are four different types of SMA, but Type 1 is the most severe. Infants born with SMA Type 1 are born with very little muscle tone, weak muscles, and feeding and breathing problems. According to the National Library of Medicine, SMA affects 4 out of every 100,000 people and 7.5 million Americans carry the gene that cause SMA. There is no cure for the disease, but the SMA Foundation says, “new therapeutics have entered clinical trials or are approaching trials in the near future.”

Mike Canahuati from Bellaire, Texas, came up with the idea of writing Avery’s Bucket List to make the most of the time she has left. Avery’s parents, Mike and Laura Canahuati said, “We can watch her die, or we can let her live. And through letting her live, we’re going to try and educate other people about this so they don’t have to go through it too.”

Avery’s Bucket List is written by Mike, but in Avery’s voice. On the blog, Avery writes, “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.”

What’s on Avery’s Bucket List?

Avery says, “OK everyone, I have a lot of living to do in just a little bit of time and I’m going to need all of the help I can get from my parents and anyone else who wants to help. Keep in mind in everything I do, the two most important things are that I’m spending time with my mommy & daddy, while at the same time spreading awareness for SMA. So with that said, please help me come up with ideas and if possible, help me complete the items on the list and/or share in the experiences with me. Nothing is too crazy and trust me when I say this, if you can dream of it for me, my mommy and daddy will find a way to make it happen. All ideas are welcome and if you can help with any of these please let me know. In no particular order, this is my bucket list:”

I CAN HANDLE THESE MYSELF, BUT WOULD LOVE IF YOU JOIN ME IN COMPLETING THEM:

Wrap my arms around my mommy & daddy
Give my mommy & daddy a big kiss
Swim w/dolphins
Go tubing down a river
Paint a picture for my mommy & daddy
Reach my 5-month birthday
Go on a road trip
Throw a party and invite all my friends & family
Swing on my swingset
Play dress up and wear all the clothes in my closet and have a photo shoot
Play dress up in my mommy’s closet and have a photo shoot
Go swimming
Be a cheerleader
Go to San Diego and visit the Zoo
Attend a birthday party
Attend a sleepover
Stay up past my bedtime watching TV with my mommy & daddy
Sleep in my mommy & daddy’s bed because I was afraid of the boogeyman in my closet
Sit up
Go hiking
Go camping & make smoresAvery's Bucket List
Make cupcakes
Bake with my Tia Kristy
Sit on my daddy’s shoulders
Lounge by the pool reading trash magazines
Get a mani/pedi
Go to a waterpark
Read a book
Have a drink with mommy & daddy
Get a massage
Ride a bicycle
Go roller skating
Be potty trained
Play hide & seek
Have a birthday party
Have as many birthday parties as people want to have with me
Celebrate my real 1st birthday
Go to the movies in my pajamas
Watch the Polar Express
Go kayaking
Make a lemonade stand
Get my drivers license
Drive a car
Go hunting
Go bowling
Make college visits with my mommy & daddy
Learn to type
Go to the beach
Visit my Nana & G-Pa in New Braunfels
Go to a concert
Learn to play an instrument
Sing karaoke
Dance

Go to an Aquarium
Visit where my mommy & daddy first met
Fly a kite

Play poker
Get a present in the mail
Go to work with my mommy
Go to work with my daddy
Go on a boat
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
Have a tea party

Have an even BIGGER tea party
Blow bubbles with my mommy and daddy.
Ride in a convertible and feel the wind in my hair
Ride in a Jeep
Race Go Karts
Eat ice cream
Go take pictures in the bluebonnets
Give butterfly and eskimo kisses

I NEED A LOT OF HELP FROM EVERYONE WITH THESE:
Go viral on the internet – I know I’m not singing a song, doing anything funny, saying something politically incorrect, or anything like that, but it would be nice if my story went viral so that SMA has a face.
Be an inspiration to others and then continue to be an inspiration to others
Teach the world about SMA
Help find a cure for SMA so kids like me can use their muscles to walk, talk, hug their loved ones, and live a long lasting healthy life
Go over 100,000 page views
Go over 1,000,000 page views
Go over 10,000,000 page views
Raise $1,000,000 towards a cure for SMA and then do it again and again and again and again
Meet someone famous who will help give me a voice in my fight against SMA so people take an interest
Visit the White House
Be on TV
Be on the radio
Be in the newspaper
Be on the Ellen Show – maybe she can help spread the word.
Meet Oprah – maybe she can help spread the word.
Be on American Idol – maybe they can help spread the word
Have a song recorded that was written about me
Speak in front of Congress

THE LAST THING I WANT TO DO:
Overcome my illness
But if not, then I’d like to take one last breath, then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents (Tommy, Laura, Jim, Walter, Julia, Joseph, and Audine).

Be sure to check out Avery’s Bucket List blog for the full list.

They would like you to add to list if you can think of Avery’s things to do before you die.  “Our goal for Avery to be the face of SMA. Just like when you say the word cancer, I don’t think there’s a single person who doesn’t know what cancer is, we want it to be the same for SMA,” Laura said.

Photo Credit: Avery’s Bucket List

One thought on “Avery’s Bucket List After Being Diagnosed with Spinal Muscular Atrophy Type 1

Leave a Reply

Your email address will not be published. Required fields are marked *