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!
Not again!
Sophia is having another night like last night. She has been moving all day and is tonight as well. Arms and legs constantly flexing and her mouth opening and closing. She had her nightly sleeping medication with no effect. Called on call neurologist and he recommended an additional dose of sleeping medicine and call Dr. Hallinan in the morning. Here we go again....
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Yes, Sophia, we are praying for you in Romania. We are praying this morning that you are able to relax and have a better day. Your mommy has such a beautiful way with words that all of us who read her blog feel that we know you, have held you and loved on you, and that you are very special. You are so blessed to have a mommy and daddy like yours. You are also blessed to have Jesus, who loves all the children of the world, especially YOU!
ReplyDeleteThank you Mrs. Gayle. It's nice to hear from you.
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