In Avery’s Honor

{coming out of hiding and posting this to Facebook in honor of Avery}

Avery Canahuati’s death has hit us very hard. We had just been introduced to her blog and her family on Friday and had fallen madly in love with their happiness in the face of a horrible future. The amount of inspiration I felt in just the three days that we were aware of her blog is immeasurable. The viral explosion of her story was beginning to counteract my immense frustration that this terrible disease was something we had never heard of, despite 1 in 40 people being carriers.

Many of you already know this, but many of you do not. Our 4 month old daughter, Elie, has the same disease as Avery. For the past month and half since our diagnosis, we have been sort of hiding: attempting to cope with the horror and the decisions quietly and keep our sadness from infiltrating the happy lives of too many others unnecessarily.

Avery’s mission though was the opposite: to spread the word as loudly as possible about SMA. What their bravery has made me realize today is that if I do not tell ALL of my friends about getting tested, then I would be partly responsible for what has happened to us, then happening to you. Although we do not have the strength, the wit, nor the stamina to take over the public fight that Avery was handling so brilliantly, I feel I must at least go public to my friends here.

So here is our request in honor of Avery:
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PLEASE ask your doctor about genetic testing for being a SMA carrier. Our family planning doctor offered us testing for Downs Syndrome and Cystic Fibrosis, but no one ever suggested SMA testing. SMA is the number 1 genetic killer of babies under the age of 2. Regardless of how you choose to proceed with the knowledge, please please understand that it is better to know before you go forward. There is no cure for SMA, there may be sometime in the future, but not likely in Elie’s lifetime. So in the meantime, your defense is knowledge of your own DNA. Get tested for Avery, it is what she wanted.
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We are still very afraid though about being shoved into any amount of spotlight since there are some extremely tough decisions ahead for us. These decisions (if you can even call them that) are causing vicious rifts even within the SMA community, some of whom even made abhorrent comments on Avery‘s story. We need to have the privacy and understanding, therefore, of our friends and family to be able to handle these without the exposition. It is for this reason that (Br)avery was such a very apt nickname for the Canahauti’s daughter. The publicity that went along with spreading her message is the one thing that keeps us in relative hiding. So please understand our need to go through this without opinion. Please know that we do have hope, but our hope is a different kind of hope than that of diseases that have had true survivors.

With love,
Elie, Marietta, and Darin

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Categories: Uncategorized | 2 Comments

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2 thoughts on “In Avery’s Honor

  1. Mandi Innis

    I’m proud of you.

  2. Nannie

    I am proud to be Eli,s great grandmother

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