I'll post the link in my SWH... it's a story about a baby born with a rare condition (SMA), and her parents made her a bucket list... she passed away yesterday, totally unexpectedly. Yes, they knew her life would be short, but not this short. The last picture they took of her was 15-20 minutes before she passed away, and she's got the biggest smile on her face!! Threw me for a loop!... and put a lot in perspective for me.
Has anyone else been following this? What did you take away from it?
Everyone squeeze your kiddos extra tight tonight!!
There are really no words to describe this sadness. This is heartbreaking for her poor family. I am in awe of their smiles as they lived her short life with her and scratched items off her "bucket list".
Thanks for bringing this up. I have been following it as well and was sad to see that Baby Avery passed away yesterday. This hits home for me because I work for a national testing laboratory as a women's health specialist and educate physcians on the importance of genetic testing and carrier screening (mainly for cystic fibrosis, spinal muscular atrophy and fragile-x).
Avery's parents are absolutely right that genetic testing along with carrier screening isn't even offered most of the time despite great coverage by insurance companies. Heck, I find physicians that do not even know what SMA is. This is not something I promote so parents can decide to abort but to be prepared for what is to come and how to prepare.
My group was asked to put together information supporting the family to demonstrate the importance of SMA education because they are looking to appear on a very popular talk show. They are committed to educating parents-to-be on the terrible condition of SMA....I hope they make it on!
I'd been following it and was hit with sadness when I learned she passed. I posted on her FB page that she did so much in her short life by sharing with people her disease and just how many families are affected by it, she, albeit her father, did more than many of us will do with ours.
My heart and prayers go out to her family, it hurts so much to lose a child. But I am very thankful to God that Avery is no longer suffering
I felt really sad, too, but I think they made a difference, and I'm so glad they made the memories they did.
Yes.. I totally didnt expect to go on today and see she had passed. HEr family is amazing for making her short life so awesome. Heartbreaking and eye opening.
GMa T---- SHe just passed at 5 months old yesterday. FOllowers of the blog, family and friends made up cute things for her to do for her bucket list.
Yes, completely heartbreaking for them.
yeah its so sad.. a very good friend of mine actually started a facebook page - show the love to baby avery so i got a ton of posts from her immediatley after it happend.. its just horrible
-it really makes you think about whats important in life
I had not been following it, but did hear about it recently and I did go to her blog today, and it totally broke my heart. Believe me that I went and gave my kids an extra big hug afterward. So sad...
How old was Avery? Was she just a baby? I dont see her grown up from that link, did her parents write the bucket list? Just wondering.
Someone JUST posted about this little girl last night! So terrible :(
