Baby Avery Loses Her Battle to Spinal Muscular Atrophy

Several days ago, I became aware of a 5-months-old little girl, whose parents had found a unique way to honor their dying child. As Baby Avery was only days younger than my grandson, the story touched my heart. Please consider a donation in this angel’s name.

“Bucket List” baby Avery Canahuati dies

By
Ryan Jaslow
avery canahuati, sma, spinal muscular atrophy(Credit: CBS KHOU)

(CBS News) Avery Canahuati, a baby who inspired countless readers as she raised awareness while struggling with a rare disease, has died. Her father Michael wrote of his daughter’s passing on the blog he and his wife had created for her, “Avery’s Bucket List.”

Avery’s Bucket List: Parents pen blog for baby dying of spinal muscular atrophy

The blog, written in Avery’s voice, encourages readers to share the story and to raise awareness about spinal muscular atrophy (SMA). The newest post was introduced by Avery’s dad, who said one of her lungs had collapsed and she went into cardiac arrest on Monday afternoon. Her father performed CPR and brought her back to life for a brief period of time before she passed away shortly after arriving at the hospital. Avery’s doctors had initially said the 5-month old girl may live as long as 18 months.

“Avery’s passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctor’s appointment only three days ago,” her father wrote. “While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends.”

HealthPop reported yesterday that her parents decided to create the bucket list to make the most of her time alive and to spread awareness on the rare disease with no treatment yet.

“We can watch her die, or we can let her live,” her father Michael said. “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.”

At 5-months-old Avery was able to scratch many items off her bucket list: The girl got her first kiss, a tattoo (temporary), her first trip to a baseball game, and other milestones aimed at spreading SMA awareness and encouraging parents to get screened for the SMA gene.

For the complete story, visit http://www.cbsnews.com/8301-504763_162-57425332-10391704/bucket-list-baby-avery-canahuati-dies/

From The Inquisitor comes this excerpt from Avery’s father, Michael

Michael then shared a letter that his 5-months-old daughter “wrote” to him before her passing. Avery writes:

“If you’re reading this it’s because I’ve gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents.  I love you veeeeeeeeeery much.  Also, tell Nana & G-Pa I love them too.  In fact, tell everyone who loved me that I love them and I appreciate them caring about me.… When I started writing my blog, I thought I’d only be speaking to my closest friends and family members.  Little did I know soooooooo many people would care about me and while I’m flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA.

“When people think of me, I hope they’ll also think of all my friends who have been through this and who are going through this now.  But what I really hope for is that when people think about me, they will not waste time sitting there feeling sorry for me, rather I hope they will STAND UP in honor of me and all of my friends (past, present, and future).  And they can do so by spreading awareness and helping to fund a cure for my friends.

Mommy.  Daddy.  I love you every bit as much as you love me.  And while I’m not here physically, I will forever live in your minds, as you will mine. Love always, Avery, Aviator, Aves, Scuttlebutt.”

Avery also asked for people to donate to Dr. Kaspar’s SMA Gene Therapy program in order to help find a cure for SMA. (If you’d like, you can donate to the fund here.)
Read more at http://www.inquisitr.com/228359/bucket-list-baby-avery-loses-battle-with-sma/#D1B1uZJUS7KBetEs.99

About reginajeffers

Regina Jeffers is the award-winning author of Austenesque, Regency and contemporary novels.
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2 Responses to Baby Avery Loses Her Battle to Spinal Muscular Atrophy

  1. suzan says:

    I hadn’t heard of this before. Thanks for sharing. It’s just amazing how many different challenging health concerns are out there and so many that we’ve made progress in and so many yet to start the progress. Sad state of affairs.

    • Suzan, as I said in the post, the story of Baby Avery touched my heart. What is so “unbelievable” is that these parents did everything right. It is also “unbelievable” that we put a price on life. Avery suffered from a rare disease, one not common enough for research or pharmaceutical advancements. Money talks.

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