So, those closest to me have known that for the last week I have not been able to get this little girl, whom I have never even met, off my mind and my heart.
Read her blog & story here:
*WARNING: you will need a
I found little Avery's blog over the weekend and she immediately found a place in my heart. It was extremely painful to read about her and I cried and cried. So, then what did I do? Well, like any self-respecting masochist would do, I subscribed to every single piece of social media I could get my hands on that had to do with Avery. I combed over the pages and pictures of her blog and her facebook fanpage and decided I would make myself part of her "bucket list."
Then, Tuesday morning I logged in and saw the blog entry that nobody expected to see yet. Avery had already lost her battle with SMA (spinal muscular atrophy) and went home to the Lord. While that is a wonderful place for Avery, that is surely painful for those left behind. I cannot stop thinking about her mommy & daddy and how they are doing what no mommy or daddy should ever have to do, right now... planning their daughter's funeral. This wasn't how it was supposed to go! How sad, how unfair! She was supposed to have 18 months! I couldn't keep it together at work and had to lock myself in my office for a while and bring myself back to the reality that life isn't fair.
I am not sure why this story affects me so much, when there is admittedly an overflow of sadness, sickness all around me. Maybe its because I saw a picture of Avery where she had on the same onesie that Lila has. Maybe because she and Lila are about the same age and I can see Lila's little face in those pictures of Avery.
Whatever the reason, I feel like maybe if I share in the story, read the story, cry, feel, remember the story, then I can help absorb a tiny, infinitesimal piece of this pain for those parents and that baby girl. You may think that sounds crazy, but I say prove me wrong. There are a lot of things in the universe I cannot explain. And it's the least I owe the universe.
So what can you, I, or anyone do? Well, Avery would like to spread the word about SMA and also advocate the testing for it so that less babies will be born with SMA. The testing is simple bloodwork done on one or both parents to see if they are carriers. If you are planning to have a child, please ask your Ob/Gyn about testing. Even if you already have healthy kids, you could still be a carrier and pass it on to future kids.
Not having kids? Done having kids? Well then you can make a donation to SMA research through The Sophia's Cure Foundation, as found on Avery's blog. You can also find them here:
An anonymous donor will be matching all donations up to 500k! Please read more on the above link for details about the gene therapy and about donations (tax deductible!)
As for me, I made a donation and I will be asking for SMA carrier testing the next time I think it's a good idea to have a baby (and it's gonna be a while!). And THAT was the biggest item on Avery's bucket list.
Life if fragile, handle with prayer.