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Saturday, May 12, 2012

Ivory for Avery

 

Photos by NAE @pomegranatetrail ©2012
Today I wore ivory for Avery.  Have you met Avery yet?  I first heard her story 
on the evening news.  When I went to learn more, I was deeply touched.  More important, I learned something.  Here is Avery's blog.

I'll tell you a bit about her and then you can explore more for yourself.  She has a Face Book page and twitter account, so look for them on her blog.

Avery was born on November 11, 2011.
At four months old she was diagnosed with SMA, which stands for Spinal muscular atrophy.  It is a genetic disorder, which when diagnosed as a young infant (like Avery), the lifespan is usually not more than 2 years.
Avery passed away April 30th.
She was almost six months old.

Upon getting the diagnosis, Avery's parents (Michael & Laura) decided to spend their time with her Living and enjoying her and raising awareness for SMA.  Here is her explanation. (BTW- I really do suggest you go back and read her blog from the beginning).
That is just what they have done, enjoy each other and raise awareness.
When they started the blog, they decided to start a 'bucket list' so little Avery could enjoy as many life experiences as possible.  This is what caught the attention of hearts around the world!  Her father, Michael, has written the blog in Avery's 'voice', which is a very endearing voice indeed!  Boy, has it worked!  Along with news programs, blogs and Face Book pages have lit up around the country.  Today along with wearing Ivory for Avery, a blogger celebrated her 6 month birthday with a call for cakes :)
I'm sure there are many other events, posts and celebrations going on as well.  
I think this little gal and her family touched me so much for a couple of reasons.  There's the usual, I'm a mother...any illness in anyone, but especially a child...and then the idea of loosing a child, which spark feelings of empathy and compassion in everyone.  Besides that, I have personal experience with the high risk pregnancy and birth of my daughter.  I had a genetic counselor.  I was the patient of a perinatologist and had 7 amniocentesis tests for gosh sakes!  I even had a screening done for Tay-Sachs while still in college.
At no time had I ever heard of SMA.
I rant, "Why not?"
I have children, grandchildren and nieces, who may someday become parents themselves.
Not only had I never heard of SMA, 
but I did not know that you can request a test for it...there IS a test for it!
But, again, I had never heard of this until Avery, with the help of her Mommy and Daddy!
It is the #1 genetic killer of children under two years old.
There is no treatment and no cure...at this time.  But,  it is the closest to treatment of more than 600 neurological disorders.  Avery's many new SMAans (which stands for SMA and Fans, she says!) have helped to raise money and awareness.  A lot of money and awareness! Amazing.  Amazing what one little gal and her loving family have done in such a short time.
So, today I wore Ivory for Avery and decided to write my own blog post so I can help Avery, her family and all of the other children and families living with SMA.
Spreading the awareness, that's one way I can help!
SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
It could be your family.

Here are a couple of other links for you:

There are ways to learn more, support, become active, and donate.  
Please investigate this as you wish, but please tell your loved ones so they may get tested and not have to go through this with their own child.
Thank you for reading this post today.
Thank you Avery, Michael and Laura

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