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October 2012 Moms
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"Bucket List" Avery has passed away :(

sjgurl784sjgurl784 member
in October 2012 Moms

https://abcnews.go.com/blogs/headlines/2012/05/averys-bucket-list-five-month-old-girl-with-spinal-muscular-atrophy-dies/

 

ETA:  I didn't realize the post below was about her passing... thought it was raising awareness for this brave little girl.  I apologize. 

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Re: "Bucket List" Avery has passed away :(

  • sdwyer0202sdwyer0202 member
    Oh my gosh. Today was the day that they were asking everyone to send in to Ellen too! I did it really early this morning when I got up! This is so sad, and not more so than any other parent who has to endure losing a child, but that it's something so deadly that few people know about.
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  • sdb421sdb421 member
    SMA is a terrible thing. A good friend and fellow mom of multiples lost her identical twin girls several years ago to SMA. It is a rare genetic condition, but terribly sad and I feel so awful for poor Avery's family. On a happy note, my friend just had another set of twin girls last week...such a blessing.
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  • AadensMommy2010AadensMommy2010 member
    That is so sad.
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  • TeachGirl323TeachGirl323
    So sad!  My heart goes out to her parents and what they must be going through!
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  • canozcanoz
    So sad, my heart goes out to her parents and family. Losing a child is heartbreaking.
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  • daronsmommydaronsmommy member
    Oh my, that is so sad. I can't imagine losing a child. My T&P are with the family.
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  • ffejsGirlffejsGirl

    So sad. T & P for her family.

    I help take care of a little girl with type 1 SMA, she just turned 3 in March!

    Her parents are physical therapists and do an amazing job taking care of her... it's truly miraculous that she's lived this long and is a such a spunky little thing. SMA is a horrible disease. 

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  • tatercatertatercater member
    So sad.  Her family clearly loved her so much.  I'll be thinking about them.
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  • clussyKclussyK member
    Goodness, I hadn't read the blog until today and it had me bawling. Such a sad story. I'd never heard of SMA before.  Thanks for those of you who posted the link to the blog to bring some more awareness.
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  • jenada2011jenada2011
    This is heartbreaking...
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  • jenmcconjenmccon member
    Soo sad!!
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  • rhodesignrhodesign member

    I read this article the other day and then heard she passed. So sad.

    We see SMA kids in our clinic. I had never heard of it until I worked at my current job. It can be detected in blood tests but not all insurance companies will cover it (mine didn't) unless you are a known risk. It's so awful.

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  • MackfarmMackfarm
    I read her whole blog last night minus the passing. I was compelled to make her a glam bag for heer glam tube. I almost finished it. Then read her blog, a minute ago. Holding back the tears :(
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  • Sami91Sami91 member

    I just read it on the Yahoo webpage =(

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  • dragonfly17dragonfly17

    So so sad. I just found out thy this family lives about 20 minutes away from me. I wonder if there is any kind help the community could offer this family.  

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  • MackfarmMackfarm
    you should see. Like making meals for them.
    very hopeful on a vba3c!!!! BabyFruit Ticker
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