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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Filed under: Health • Overheard on CNN.com
soundoff (25 Responses)
  1. Jeff Frank (R-Ohio) "Right Wing Insanity"

    FIRST

    There has been a lot of contraversy regarding this topic. I had seen it on last nights news. This has obviously gone viral online also. I expect the usuall flash mob here too.
    This baby shall be in our prayers.
    As far as the bucket list? It gives me the first impression that one or both of the parents suffer from Munchausens by Proxy (spelling?). Where does a baby have the faculty to conjer a list of any kind anyways?
    This cannot be optimism, what they are doing.

    April 30, 2012 at 5:30 pm | Report abuse |
  2. The Tin Hat Brigade Is Here

    Poor baby. My heart goes out to her. God, poor sweet little girl. I have nothing more to say.

    April 30, 2012 at 5:34 pm | Report abuse |
  3. The Tin Hat Brigade Is Here

    Except for one small point: they are not making her sick deliberately. She is already sick. They may be exploiting her for attention, but it's not the same thing.

    April 30, 2012 at 5:42 pm | Report abuse |
  4. ♚Mmmmm♛

    oh my goodness..that is a cruel term for bucket lists for babies...reminds me of those poor aborted babies

    1 i get figure back
    2 my indiscretions remain discreet
    3 no responsibility for the next 18 years
    4 mo money! mo money! mo money!
    5 let the womanizers off the hook
    6 won't be callin grandma maw-maw
    7 the conveniences beatout every 7-11 store
    8 im unable to carry twins my job is my baby
    9 just do it better than taking the pill
    10 poor little bucket kickers 😦

    April 30, 2012 at 6:04 pm | Report abuse |
    • What??

      I saw you use the same term the other day!!! Make up your mind!!!! You were JOKING about it, unless trolls don't remember what they wrote!!!!

      April 30, 2012 at 6:29 pm | Report abuse |
    • ♚Mmmmm♛

      i was NOT referring to babies...i was referring to those suffering from
      O. L. D.

      April 30, 2012 at 10:41 pm | Report abuse |
  5. Teri Taylor

    I am part of the SMA family. My grandson, Cash, was diagnosed at 3 months old. We were also told he would be gone in a matter of months. I, along with many others, have tried to reach out to the Canahuati family to help them, while also asking that they give the CORRECT information. While we are happy they are getting the words "Spinal Muscular Atrophy" to become a household word, they are also setting us back, as they are describing it as a death sentence, with no hope, no treatment, and no cure. There is HOPE. There are TREATMENTS. Gene Therapy is around the corner. How do I know this? Because we have been a part of this "family" for longer than they have, and we jumped at anybody's offers of help. Instead, they have told us to stop wasting their time!!!! If you really want to know about SMA, ask CNN and any other news agency to spend a day with one of us. You will be surprised at the hope there is, and the quality of life that these SMA kiddos are living. I hope they realize in time for their daughter Avery, that there are tons of things that can be done, instead of waiting for her to die.

    April 30, 2012 at 6:14 pm | Report abuse |
    • Pete

      Thanks so much for your info,I hope they take this bit of good news and run with it,God Bless!!

      April 30, 2012 at 6:54 pm | Report abuse |
    • banasy©

      Very valuable.
      Thank you.

      April 30, 2012 at 7:16 pm | Report abuse |
  6. Pete

    These parents, the Canahuatis ,are the strongest parents I've seen in quite a while,having such a beautiful baby to lose her to a strange disease.May God bless both of you in this painfully stressfull time,and carry your little bundle of joy to Gods heavenly place when its time,but not before you get your bucket list finished.Bucket list:hang gliding,scuba diving,horse riding,ride a ferris wheel,lite sparklers,snow ski,roller coaster ride,there's so much in life to enjoy everyone,don't wait till its too late to make yours out,I almost did, being a survivor of stage 4 cancer,but ya know what,I have a project that's dear to me,my personal bucket list,takin care of my disabled son,a survivor of a auto/ motorcycle accident.He my inspiration for living and he keeps me going everyday 24/7,I don't think I need anything else in life,if he's happy and healthy,my life is golden.People don't know what they have till they lose it,don't be one of those examples in life,don't be shy,grab with gusto and enjoy life while ya can,thanks to all,take care...

    April 30, 2012 at 6:31 pm | Report abuse |
  7. banasy©

    My heart goes out to this family.
    Forget bucket lists, and love, love, love your baby!

    April 30, 2012 at 7:17 pm | Report abuse |
  8. Philip

    Tip o' the hat to CNN's community director David Williams for going back through our condolences regarding leeintulsa's recent parting. He actually took the time to save them and send them to Lees's email for his family to cherish.
    What a guy! Thanks, David Williams. We appreciate you.

    April 30, 2012 at 7:42 pm | Report abuse |
  9. Philip

    ...and don't forget to give your baby plenty of Bayer brand childrens aspirin to keep them healthy. An aspirin a day keeps the doctor away, hence, few doctors?

    April 30, 2012 at 7:45 pm | Report abuse |
    • banasy©

      It is welluknown that aspirin, given to children, can cause Reye's Syndrome.
      It has not been marketed for childre in YEARS.
      You will not find a Bayer Aspirin that says 'Children's' on it in any store.

      April 30, 2012 at 10:57 pm | Report abuse |
  10. Philip

    Oh. That would explain why Bayer AG began marketing children's aspirin in 1962. (and hint at why Bayer AG, after patenting heroin in 1898, began marketing heroin as a "side-effect free" childrens cough syrup)

    April 30, 2012 at 10:03 pm | Report abuse |
    • banasy©

      sigh.
      So what?
      There was a LOT of things marketed back then as cures that had ingredients that are illegal now; science has progressed immensly in the past 120 years.
      Coca cola used to contain cocaine; it doesn't now.

      C'mon now!

      April 30, 2012 at 11:05 pm | Report abuse |
  11. @@PHILIP

    Good night GENIUS (sarcasm intended)

    April 30, 2012 at 10:06 pm | Report abuse |
  12. fernace

    The "bucket list" is obviously more of a parents "wish list," things they hope to do w/their child before she gets too ill! I do hope they take blogger Teri Taylors advice & bug as many doctors as they can, to inform themselves! There are many parents who get a devastating diagnosis for their child, but there are an equal # of miracle stories of kids who not only survive but thrive & become inspirations to their communities! Remember the little wheelchair bound girl who made the news last year, because she wanted to be a cheerleader? A cheer coach from another school gave her the chance & her own school promised to rethink their policies! This little baby, Avery, is still alive! Don't count her out yet!!

    April 30, 2012 at 10:37 pm | Report abuse |
  13. Maggie

    I don't know what went on here, but I do not think this is the appropriate thread to post someone's agenda. This is about a baby and her family's struggle, not more, not less. If one has nothing to say about the posted topic, don't say anything at all!!!

    April 30, 2012 at 10:43 pm | Report abuse |
  14. Ummmm

    Maggie, If you feel that strong about your statement... then you would post under your own s/n
    Good nite

    April 30, 2012 at 10:47 pm | Report abuse |
  15. O K banasy

    I was just about to come back in and say everything that you just said !! There's a whole group of dangerous rocket scientists in here!
    Reye's Syndrome was identified in 1963 and I know of someone whose 8 year old died from it after ingesting aspirin for a flu. 90% of youngsters will develop RS after taking aspirin. 3 out of 4 will die.

    April 30, 2012 at 11:24 pm | Report abuse |
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