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“Bucket List” Baby Passes Away, Raises Awareness of SMA

“Bucket List” Baby Passes Away, Raises Awareness of SMA

When doctors told Laura and Mike Canahuati their infant daughter, Avery, wouldn’t live past 18 months, they were devastated. Avery was diagnosed with spinal muscular atrophy type 1, a rare and incurable genetic disorder which kills more children than any other genetic disease.

Here’s where Avery’s story takes an unexpected turn. After a few days of grieving, knowing there was nothing that they or their doctors could do, Mike decided to make the most of Avery’s short life. He set up a blog for Avery, written in her voice – and laid out some life goals.

The front page of Avery’s blog reads: “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.”

Avery’s bucket list is heartbreaking to read, with goals as mundane as “reach my 5 month birthday” or “be potty trained,” and ambitious as “speak in front of Congress,” “be on American Idol,” and “overcome my illness.” The blog serves as a reminder to everyone how much we take for granted – and how devastating it is when a child won’t even be able to reach normal milestones. In the past month, Avery managed to cross an impressive number of items off her list – from flying a kite to getting her first kiss.

On April 30, Avery passed away suddenly at six months from complications related to her illness. Mike is continuing to maintain the blog, hoping to spread awareness about SMA and help fund research to hopefully help other children with the disease. 1 in 40 people carry the gene for SMA, and it’s not included as a routine genetic test for prospective parents.

Avery’s parents are currently supporting a donation drive to help fund an experimental treatment which may, one day, be able to treat children with SMA. An anonymous donor has agreed to match all donations up to $500,000. More details can be found on Avery’s Bucket List.

 

Related Stories:

How You Can End the #1 Genetic Killer of Infants: SMA

The #1 Genetic Killer of Young Children that You’ve Never Heard Of

What is Spinal Muscular Atrophy (SMA)?

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Image Credit: Mike and Laura Canahauti

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44 comments

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9:49PM PDT on May 22, 2012

You are in my thoughts and prayers, I am so sorry for your loss.

11:54AM PDT on May 13, 2012

Sad.

3:40PM PDT on May 7, 2012

Thank your for sharing your precious child with us.
God bless.

9:09PM PDT on May 6, 2012

Can it be detected in utero?

3:50PM PDT on May 6, 2012

WINN.......THANX FOR OYUE KIND REPLY

12:03PM PDT on May 6, 2012

These parents were so blessed to have this child in their lives. I hope they can find peace and comfort in the loving memories they have of their baby and know she has made a difference in our world.

5:02PM PDT on May 5, 2012

Yeah it sucks. But genetic abnormalities are not some failure, they are the norm, they come with the territory of being built by protein code. It's incurable. And if the conditions to create the abnormality are completely eliminated, which they really can't be, then another abnormality will take lives. If life were precious, we'd be invincible and immortal.

What is, is. If you let your hearts break over every death, you'll all become neurotic messes. call me cold if you must, but we need to accept the things we can't change.

4:04PM PDT on May 5, 2012

Wow and sad and blessed.

1:20PM PDT on May 5, 2012

heartbreaking

10:15AM PDT on May 5, 2012

My heart breaks for Avery's parents. It's such a tribute to their child the way they carried her story to others. Hopefully, it will help others. May God Bless all of you.

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Julie M. Rodriguez Julie M. Rodriguez is an arts, green living, and political writer based in San Mateo, CA. Her work... more
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