Princess Sophia

Princess Sophia
My name is Sophia Grace Crawford and I am one year old. I have been diagnosed with Batten Disease, a rare and incurable genetic disease that will cause me to lose the little sight that I have, worsening seizures, loss of the ability to move my arms and legs, and will ultimately leave me bed ridden. And it is always fatal. I will leave this world within the next two years but I don't know exactly when. Until then, my Mommy and Daddy want to help me bring awareness to Batten Disease. Please come on this journey with me so that, together, we can celebrate each day that I have left!

Bucket list item completed: carved a pumpkin

My Aunt K helped me carve a pumpkin and even bought me a cute pumpkin tutu. We made a big mess on the porch but had lots of fun!

2 comments:

  1. UnknownOctober 16, 2012 at 3:11 PM

    Sweeeeet!! You look adorable in your little tutu and the pumpkin is nice too.

    ReplyDelete
  2. AnonymousOctober 16, 2012 at 8:11 PM

    So cute. I love her in tutu. Mamaw

    ReplyDelete

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