Avery

I came across a blog yesterday about a little girl named Avery. Avery was diagnosed with SMA, which is something I had never heard of. You can find out more about it here. Seeing as I just had a baby and went through all of the tests I thought was offered to me, you would think I would have heard of this disease before. It causes more deaths in babies than any other genetic disease, and yet for some reason it was never mentioned at any of my appointments as something worth checking to see if the husband or I were carriers. Type 1 SMA (which is the type Avery was diagnosed with) presents itself sometime prior to 6 months but Type 2 can sometimes not present itself until the child is 18 months. 

Avery's blog has been all about her getting to do as many things as possible in her life as with her type of SMA it isn't likely to live past 18 months. Her parent's also started the blog with the hope of getting more awareness about SMA. Avery's parents have apparently done a good job - if you google "Avery" it is the fourth thing that comes up (after a few well known companies). 

Unfortunately Avery suddenly passed away yesterday. 

Her father posted this picture on her blog that they took of
her only 20 minutes before she passed.  Look at that smile
Isn't  she beautiful?? 

  It's interesting how someone you don't know and have only known about for 24 hours can affect you. It breaks my heart for this little girl and her family. It reminds me how blessed I am that I currently have a healthy little girl. I am so incredibly grateful for the fact that we haven't had to go through what that family has gone though. I can't imagine there being a greater pain than to out live your child. 

  I know it isn't much but I wanted to do my part in sharing Avery's story and about SMA. If I had known about SMA prior to having Norah I would have certainly asked it be included in the genetic testing I had done so that if Matt and I both happened to be carriers we could have researched how to prepare for our child to possibly have SMA. 

You can find Avery's blog here: www.averycan.blogspot.com 

_____________________________________________________

If you like my blog please click the image below. 

There is nothing to sign up for, just click and you are done. Thanks!