I stumbled across
this blog about a little girl named Avery. Her mom and I went to high school together and our kids are only a month apart in age. We actually saw each other, both pregnant, at our 10-year reunion in San Antonio last summer.
At the beginning of April, Avery was diagnosed with SMA (Spinal Muscular Atrophy). It is the #1 genetic killer of infants and children under the age of 2, but I had never heard of it until I started reading about Avery's story. SMA is a degenerative genetic disease that slowly paralyzes a child until they lose the ability to use their limbs. It affects their major organs, respiratory system, and it will eventually cause Avery to die.
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| Laura and Avery |
Avery has an amazing
bucket list of all the things she wants to do in this life. Her parents are documenting their journey every step of the way but are most focused on spreading awareness of SMA.
I thought, "I can help!"
My little blog doesn't have a whole lot of followers, but I hope to create some awareness in a group of people who may not know Laura and her family. We can all help prevent another child from being born with SMA.
Things I find baffling about this disease:
1. One in 40 people carry the gene (that's pretty common!)
2. SMA testing isn't currently in the "docket" of pre-screening tests that doctors run when a woman gets pregnant, but it is an OPTION. All you have to do is ask for it.
3. There are next to no clinical research studies currently being done for a cure.
Why not!? Smart grad students everywhere looking for a thesis project - pick this one!
I want you to read about SMA. It breaks my heart that they're going through this, but somehow they're trying to make this very scary disease fun and incredibly informative. They are making a huge dent in their mission to spread awareness - three days ago BabyCenter started a campaign to send Avery a
thousand smiles and they're well on their way! Why don't you send her one too? I can't imagine if this was Travis - how I would react... if I could handle it.
Watch more about Avery
here.
...
Join me in celebrating Miss Avery while we can. Cheer her on and if you can give something to help make her bucket list more complete, please do so.
Laura and Mike - I would like to gift you 2 round trip flights on Southwest, to anywhere they fly. Kids fly free if they're under 2 years old so Avery can just sit in your lap! I hope this helps her get closer to one of her bucket list destinations! Just let me know where you want to go and when, and I'll book it for you.