Mitochondrial Disease Awareness Week

 
 
 

Had you ever heard of Mito before you met or started reading about Grayson? I know I had never heard of the disease until about a year and a half ago.

I bet you’ve heard of cancer though.

And I bet you’ve heard of all of these too.

Grayson, and most other kids with Mito, don’t look sick on the outside (but they sure look cute, huh?).

If you are in Texas, and want a great excuse to eat pizza this week, eat at any California Pizza kitchen and help Grayson and all those suffering from Mito. (Don’t forget to print and bring the flyer).

This just says it all.

My hero had a GOOD day today!

10 Comments

  1. Esperanza on September 18, 2012 at 2:19 am

    Wow, those facts are shocking. I had NO IDEA that more children die of Mito than childhood cancer, nor that so many are born with it. I will admit that I had never heard of it before I "met" you and Grayson but I'm so glad that I know more about it now. Thanks for sharing all of this info. I'll definitely link to this post on my blog this week.

  2. Erin on September 18, 2012 at 2:30 am

    Cute cute pics, and so happy you had a GREAT day!!! I certainly know more now then two years ago, and it amazes me how something I never heard of affects so many! I'll be eating pizza this week for sure!!! xoxo-

  3. Stefanie Blakely on September 18, 2012 at 2:33 am

    I am so proud of you for sharing this info & raising awareness. Like E, I find these stats so shocking– it's unbelievable that we don't know more about it, when it's more common than we think.Those pics of G are ADORABLE. He looks especially charming this week!!

  4. Coco on September 18, 2012 at 3:06 am

    It's shocking and frustrating how little most people… even most doctors… know about Mito. I had heard of it previously, but only in a vague reference as a big bad mysterious disease that I didn't know anything substantial about. We're *still* waiting on the army to decide about the genetic testing on my nephews, it's been over 9 months, and all we know is that they have a demylenating disease with white spots on their mri… so that narrows it to mito, ms, ald (which is what the specialist actually thinks it is), and other things in the same vein… waiting for answers sucks, especially after years of being misdiagnosed. So frustrating.But Grayson looks adorable! And that last poster about your hero, totally choked me up. Such a beautiful statement.

  5. Jill on September 18, 2012 at 4:19 am

    Elizabeth – I had no idea what I was going to cook for dinner later this week and thanks to you I don't have to cook. CPK it is. Grayson couldn't be cuter. The stats you posted really are alarming. It always amazes me that diseases like this aren't widely known. Thanks to you and Grayson – you're changing that. Hope you continue having a better week ūüôā

  6. allthesunforyou on September 18, 2012 at 4:22 am

    No – I had never heard of it before "meeting" Grayson and it is infuriating how it gets no press even though it is more devastating than childhood cancer. Those facts are shocking, to say the least.I love Grayson's outfit in those pictures! He is so handsome, and I'm thrilled that he had a good day!

  7. jules on September 18, 2012 at 5:27 am

    I had no idea more children died from Miti than cancer. Wow.I have met only one other child with Mito– a little girl when I volunteered at a local center for the blind's infant and toddler program, about two years ago. She had high lactic acid issues in the early days after birth as well, I remember.

  8. Alex on September 18, 2012 at 2:49 pm

    Wow – I had no idea. Thanks so much for sharing this information. And Grayson is adorable as ever! What a fabulous smile he has!!!

  9. Becky on September 18, 2012 at 3:22 pm

    I'd never heard of Mito before you and G enlightened me. Thank you for being an advocate – for him and all the other kiddos with Mito. and, G, well, that kid is beyond adorable.

  10. basebell6 on September 19, 2012 at 1:18 am

    Had never heard of it either! Love those Grayson smiles! And how awesome of California pizza!

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