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!
My daddy's birthday
Today is my daddy's birthday. I love him so much! He said that he is so happy to be spending his birthday with me--I don't know why he said that, he should be excited about cake and gifts! Silly daddy! Daddy said that he hopes he can spend his next birthday with me--I wanted to tell him that I'll pencil him in on my calendar. :) but that got me thinking: what kind of birthday party should I have? I hear that they are lots of fun. If anybody out there has suggestions for me, let me know! Mommy and Daddy said they want it to be the best birthday ever and I am in total agreement!
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