April 30th, 2012
04:30 PM ET

Overheard on CNN.com: Bucket list for a baby

Editor's note: This post is part of the Overheard on CNN.com series, a regular feature that examines interesting comments and thought-provoking conversations posted by the community.

Mike and Laura Canahuati started a blog about their nearly 6-month-old daughter, who is expected to die by age 2 because of a genetic disorder called Spinal Muscular Atrophy Type One. Mike Canahuati has blogged about a "bucket list" of simple moments and important milestones, which went viral and then inspired our readers to post must-do ideas for a child's life.

Texas couple pen a 'bucket list' for their baby with fatal illness

We heard from people who had experience with the same illness.

Marietta McMurry Engle: "It is so wonderful that this story has gone so viral. We were hit with the same diagnosis for our daughter just two weeks before this little girl received the same. This is incredibly hard to go through and for the most part all we want to do is hide ... but a large part of the horrible shock was that we had never heard of SMA, or its prognosis before the doctors gave us our news. So I am in love with Avery's family for going so public, for being so witty! and for making me realize that it is OK to be happy for the short time I still have my daughter ... eliebean(dot)wordpress(dot)com. Get tested. No matter what you choose to do with the information, at least you will know."

One father said his own son was managing to live with the condition.

Dennis David: "My son was diagnosed with SMA (Type 1) and given months to live. That was nearly four years ago. It has been difficult, gut-wrenching at times, but he has defied the odds. He is a happy boy who loves life despite his disorder. If SMA is going to take him it won't be without a fight."

SILVERMIST: "Hold on to your faith and never let it go. We need hope even in the midst of our trials and tribulation. Your son is truly blessed to have a wonderful father like you and it's amazing to know how you are learning from him. God bless you, sir.

joe2cents: "Semper fidelis, that boy of yours is one tough Marine. He will beat it and he will make it. Wait and see. As a parent, I admire your courage."

Some shared their own experiences.

Brational: "The parents of any child with a fatal genetic disease live in solidarity with the Canahuatis. No one should live longer than their children. I am here to tell the Canahuatis to keep hope. My son was born with cystic fibrosis, the most common fatal genetic disease in people of Northern European descent. When he was born, the life expectancy was about 15. When he was 8, it was 20. When he turned 20 it was 37. And now finally there is hope on the horizon for a treatment based on genetic medicine. In two months, he will turn 21. Maybe when he turns 37, life expectancy will be 76. Keep your hope alive. Maybe when Avery is 2, life expectancy will be 3, and when she is 3 it will be 4. Remember that bearing the burden will make you strong enough to keep bearing the burden. Recognize that you have more appreciation for every moment of your daughter's life than people who have no reason to think that a given morning might be their child's last. You won't have the regrets that people have when they take their child's life for granted and it is lost. Focus on life. Know that 'normal' is what you do every day. Your normal and my normal might not look like normal to other people, but it's still normal to you."

There were readers who wanted to share their impressions about the blog.

jarrett622: "This little girl couldn't have asked for more perfect parents given her situation. I discovered their blog a couple of weeks or so ago. Amazing, touching, and many many other words. I hope Mike will or has considered turning their blog into a book at some point. What a wonderful legacy for Avery. I've discovered, as I'm sure many other parents have, that the majority of parenting is done by the 'seat of the pants' method. You do what you can do given the information you have at that time. I don't know how I would have reacted or what I would have done if I had ever been in their shoes. I continue to pray for them for strength to get through all this."

Others added to their bucket list for a child.

poljunkie: "Sit on Santa's lap, play in the snow, build a sand castle ..."

ReallyJersey: "Blow bubbles, slide down a slide, ride a pony."

poljunkie:
"Ride a merry-go-round
"Play tag, and fly a kite
"Slurp spaghetti noodles, one at a time and get sauce all over your face!!!!
"Throw a snowball

"Catch a snowflake on your tongue ... Roast a marshmallow ... Dance on top of your daddy's shoes..."

Some thought a little longer-term.

Mr_America_007: "Just for the hell of it, here's my bucket list.

"5 – Wrasslin a gator
"4 – Finally beat the old man in a wrasslin match
"3 – Punch a liberal
"2 – Try a light beer
"1 – Appear on my favorite TV show, Ice Road Truckers."

sazmi18: "As time passes, this bucket list will increase a hundredfold.
"Go to a concert
"Play a video game
"Eat Italian food
"etc.
"etc.
"etc."

But those simple family moments were what everyone couldn't stop thinking about.

cbt325xi: "Dig up worms and go fishing with your dad."

lxNay:
"Stay up late for the tooth fairy
"Eat a pickle
"Get your first hair cut"

A few readers weren't sure of what to make of the list. And others want to remember those first gummy bears and smiles.

thatwave: "While the news of their daughter's impending death is horrifying and sad, they'd be best off loving her and giving her great baby care instead of trying to create a pretend personality and stuffing her life with experiences that simply don't matter to an infant who really wants cuddles, food, warmth, a clean diaper and sleep."

NM2000: "Once again, it's clear that you've never been in this sort of situation."

lxNay: "Their 'bucket list' thus far does not contain any ridiculous hopes. Really, have you looked at it? I think in some ways, it is more about being attentive to those first experiences that every baby and parent has. I didn't pay attention when I gave my son his first gummy bear and sadly, I think I have forgotten his first smile, but these parents want to commit to their memory every single little and bigger thing. I appreciate them wanting to make sure that these things are never forgotten memories - like tears in the rain."

What's on your bucket list? And, would you ever make a bucket list for a dying child? Share your opinion in the comments area below and in the latest stories on CNN.com. Or sound off on video via CNN iReport.

Compiled by the CNN.com moderation staff. Some comments edited for length or clarity.

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soundoff (25 Responses)
  1. @PHILIP (not this time)

    @Ummm, ? What ?

    April 30, 2012 at 11:59 pm | Report abuse |
  2. Mike Wilkinson

    I do not speak here for Mike & Laura but I know them well; Laura since a young child. Their goal in Avery's Bucket List is simply to create awareness of this disease and get the information out there that a couple may be tested in advance of pregnancy to learn if they might pass this on to their baby. Most assuredly they wish to help others avoid the agony they are dealing with. I had never heard of SMA nor my wife, a nurse, and apparently as well many other medical professionals know nothing of SMA. Mike and Laura (the teacher) are providing a great service and Avery's life is an accomplishment and not be in vain.

    One earlier comment mentioned all the things that might be done. Perhaps there is a great degree of variability in the intensity of SMA, I don't know a better way to describe this, because little Avery could not have found more advanced treatment options than in Houston, TX; proximal to where they live. Her little body failed at an astounding rate.

    In closing I want to say that Mike and Laura are a courageous young couple and have done what most of us would not be able to do. Their resolve is amazing. Their motives, for you doubters, are as simple as providing as much humanity to man as possible from a very sad situation. I say "thank you" Mike, Laura and Avery. For suffering you have prevented and will never know about. May you be blessed for the remaining days of your lives. May your memories of Avery bring you comfort and peace. We love you.

    Mike W.

    May 1, 2012 at 11:43 am | Report abuse |
  3. J

    She passed away yesterday afternoon, according to her father. I was so devastated to read the news, and even more so to read the "note" she left her parents.

    May 1, 2012 at 12:20 pm | Report abuse |
  4. Pete

    Well,she's in a better place and her wonderful parents are finally at peace.Shes also in Gods hands now and she'll be OK....

    May 1, 2012 at 1:39 pm | Report abuse |
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