I was going to make a post about the best renditions of the National Anthem, but I’m gonna save that for another day because I have something much more important to talk about right now.
I just read an article on CNN about a heartbreaking story of a young couple who’s 5-month-old daughter Avery was just diagnosed with Spinal Muscular Atrophy. For those of you aren’t familiar with SMA, it is a genetic disease that causes weakening of muscles and affects motor skills. There are different stages of the disease with different severities, but children with SMA are usually not able to walk, and over time their muscles continue to deteriorate. It is currently incurable. The reason I know about the disease is because my 4-year-old niece Kayla has it.
So when I read this article, it really hit home. I can only imagine how physically, mentally, and emotionally draining it has been for these parents (and will continue to be throughout Avery’s life).
But the cool thing is how they have responded to their daughter’s diagnosis. They have created a blog in which they write posts from Avery’s perspective. Blog posts are written in a way that is geared toward checking off items from Avery’s bucket list. These well-written, cute, and informative posts break the reader’s heart because of the seeming inevitability of the disease.
This disease is relatively rare, which means that there is a shortage of knowledge about it and a lack of funds being allocated towards researching a cure. The beautiful thing about Avery’s blog is that it is both inspiring and informative, helping spread news of the disease to people who may have never heard of it.
I encourage you to read this article from CNN about Avery and her parents, and check out the blog.
Here is the article: http://edition.cnn.com/2012/04/28/us/texas-baby-bucket-list/index.html?hpt=hp_t2
Here is the blog: http://averycan.blogspot.com/
Here are my adorable nieces Kayla and Emmy:
If you have a minute, please vote for Kayla so that her parents might win a modified van that would make loading and unloading her power chair much easier. (I’m super buff and would load and unload that thing all day if I could, but I’m in the wrong hemisphere for that. But seriously, I am really strong.) You have probably seen me post the link on Facebook, but here it is again. Remember you can vote everyday until mid-May.