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dying-baby-has-bucket-listAvery's Bucket List

Imagine the joy that ensues when you bring a new baby into the world.  And then you find out, after a getting to know your child a few months, that she has an incurable, terminal disease.  Parents, Laura and Mike Canauati found out just that. Their five-month-old baby girl, Avery has spinal muscular atrophy, which, in short, eliminates muscle function.  And Avery has the worst kind of spinal muscular atrophy or (SMA).  Little Avery has been given just 18 months to live.  After the shock and grieving of the diagnosis news, the parents started, "Avery's bucket list" and have been blogging from Avery's point of view about her daily life and health challenges.

Parent's Bucket List for Dying Baby

Avery's blogs can be seen at: http://averycan.blogspot.com/, where you can see her bucket list and read about her.  She cute little girl also has a facebook page that you can connect with if you'd like to know more about Avery and her condition.  Her parents are trying to make the condition known and are hoping that in the future, OBGYN's will take note and start routinely testing parents for SMA.

About Spinal Muscular Atrophy

Spinal muscular atrophy is a genetic disorder that over time, kills muscle function, progressively leading to lung, feeding, and heart failure.  It is at the top of the list as the number one genetic killer of kids below the age of two.  Yet it is puzzling that not many people know about this.  If both parents are carriers the baby has a 25 percent chance of getting the disorder.  The probability of being a carrier of SMA is one in 40 people.

Avery's Bucket List

Avery's bucket list is a compilation of activities and accomplishments that the parents would like for Avery.  The list includes sweet things, such as kissing dad and mom, losing a tooth, meeting Santa Claus, having a first kiss, among many, many other milestones.  And true to the original "Bucket List," the blog shows which milestones have been accomplished, as the items are checked off.  The parents know that Averywill not likely cross off the whole list, however, they are being creative in helping her achieve the rites of passage that we did later in our lives, including getting her a fake drivers license and even visiting a college.  She got her first kiss from another little boy that has SMA.

Symptoms of SMA

Babies with SMA type I have little muscle tone at birth and show signs of weak muscles, in addition to trouble breathing and eating.  The type III version of SMA does not show symptoms until age two.  The weakness in muscles is often most notable in the legs and shoulders and gradually gets worse over time.

Symptoms of SMA in babies:

  • Poor head control
  • Difficulty eating
  • Baby seems "floppy" when moving
  • Difficulty breathing
  • Little movement that is spontaneous in nature
  • Gradual, increasing weakness (older infants to  toddler age)
  • Marked weakness in infant
Avery's parents have shown courage and love, as they watch her deteriorate.  They are a good example as to how to handle tragedy.  They could have just sat and cried.  And I'm sure they have.  But they have also made the decision to enjoy their time with their little girl and also spread awareness of a life threatening disease to as much of the world as possible.
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