(Closed) Baby Avery passed away yesterday….

posted 6 years ago in Babies
Post # 3
645 posts
Busy bee
  • Wedding: May 2010

I saw that. Breaks my heart. Such loving parents.

Post # 5
8882 posts
Buzzing Beekeeper

OMG :'(

Post # 6
1828 posts
Buzzing bee
  • Wedding: September 2012

oh man thats so sad. one of my coworkers lost her first born to SMA at 5 months, as well. its so horrible…

Post # 7
1101 posts
Bumble bee
  • Wedding: August 2012

Breaks my heart ๐Ÿ™

Post # 8
1013 posts
Bumble bee

oh my lo0rd i am at work and i just started crying.  I couldn’t imagine going through something like that. So terrible. 

Post # 9
9824 posts
Buzzing Beekeeper

This is heartbreaking.

Post # 10
7293 posts
Busy Beekeeper
  • Wedding: October 2011

Wow , I was just reading her blog yesterday ๐Ÿ™

Post # 11
3626 posts
Sugar bee
  • Wedding: September 2012

Oh no! I just heard of this blog this weekend. That was very unexpected.

Post # 13
1669 posts
Bumble bee
  • Wedding: March 2012

So sad!  I just heard about the blog last week and was really hoping that little Avery would be able to do all the things on the list.  I can’t even get passed the first sentance without crying so I will try to read it later when I’m not at work.  : (   Her parents are wonderful people and I will be praying for them during this hard time. 

Post # 14
9483 posts
Buzzing Beekeeper
  • Wedding: October 2012

Poor baby.  ๐Ÿ™

Post # 15
2216 posts
Buzzing bee
  • Wedding: August 2012

I almost cried at work too.  How sad ๐Ÿ™

Post # 16
5547 posts
Bee Keeper
  • Wedding: December 2011

I just wanted to share something my dad wrote about this on his FB today. He has been waiting on a transplant for 4 years, langushing away on a dialysis machine. While I would never want to “steal her thunder” 113,000+ people are waiting on transplant and 18 die everyday, never getting to finish their own “Bucket List”

Avery Canahuat was a baby girl who died yesterday. You may have seen news about her or read about her here on Facebook. She had a severe and incurable genetic disorder, Spinal Muscular Atrophy. Her parents published a blog to share information about the disorder, and to increase visibility of the disease, because as we all know, visibility is what drives research and treatment. Part of the blog was a “bucket list” of ordinary, everyday items, things like, “make cupcakes”, “attend a baseball game” “build something with my daddy”, and “wake up smiling”.

Avery achieved international fame, because of the effects of her disease on her life and the emotional impact of knowing all the little, day-to-day activities and special, once-in-a-lifetime activities that she will miss. Tears streamed down my face as I read the words her father used, as Avery, to describe her disease and life, and the hope for a future. If you could read her story, and her words, without tears then don’t bother reading further.

I have a few other people that I’d like you to consider, and think about their bucket lists. They are people, like Avery, who have severe and life-threatening disorders. They are people who need an organ transplant. Today, in the United States, there are 114,169 people on transplant waiting lists. There are people who need lungs, hearts, kidneys, livers, pancreas, corneas, bone and other tissues.

Your lung might allow a teenage girl with cystic fibrosis to attend her high-school prom. That same girl might actually be able to walk down the aisle at her wedding, rather than rolling in a wheel chair, because she can’t breath well enough to stand.

Your heart might beat in the chest of a middle-aged mom, whose own heart stopped working due to a pneumonia infection. Your heart will allow her to see her own children play baseball, finish school, and will give her the strength and energy to dance with them rather than lie quietly in bed, hoping for another day.

Your kidney could change the life of a dad with kidney failure, who spends many hours each week connected to a machine filtering his blood to stay alive. Your kidney could give him the strength to take his son to a baseball game, play catch, or go for a hike. He could become a grandpa, seeing his newborn grandchild, watching her grow—doing all those little things, maybe even, “building something with Grandpa.”

Your liver might give an adolescent boy the chance to play another game of basketball, or time to learn to play the guitar. Maybe he will be the one to take his friend with cystic fibrosis to the prom. They both dance, facing a lifetime of new tomorrows simply because someone else shared life with them.

Today Facebook has added a new category to member status, organ donor. It is a blatant effort to increase organ donation by making more people aware and socially pressuring individuals that might never have considered donation to think about it.

Why would you sign up to be an organ donor? Remember Avery, with her bucket list of little and not-so-little life accomplishments? If you are an organ donor, then YOU may help someone else complete some of those bucket-list items. Share your life.

You can get more information about donating, and become a registered organ donor in your state at:http://www.donatelife.net/

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