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!
A Hard Night
Sophia had a hard day yesterday--just not feeling well at her daddy's birthday dinner. We brought her home and she settled for about thirty minutes and then she was back at it again. Last night, we gave her three times her normal amount of sleeping medicine (at different times throughout the night). She didn't go to sleep until 5am. We fear seizures but if it is, they are unlike her usual seizures. We fear effects of Batten Disease but we are still so unfamiliar with how this disease will affect Sophia specifically, we just don't know. And of course she has an ear infection that she is on antibiotic for so it could be that. Or a combination of all three. What we do know is that she spent all night crying in pain, her limbs constantly flexing and jerking, and her mouth would not stop opening and closing. Please keep her in your prayers and thoughts today. We may have to go to Cincinnati Children's Hospital if she doesn't improve.
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