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: Get a haircut
Mommy and Aunt Tracy took me to the salon to get my haircut! And even though the people working there were not very friendly and did not speak to me at all (RUDE!), I'm really happy about my haircut. I cried through the whole thing---I just didnt know how I'd feel without all my curls! But mommy said that I was going to be beautiful and that everyone would want my haircut too! So, when it was all over, mommy cried but was happy too. She said that I am still the most beautiful baby girl in all the world and that silly hair can't change that! Plus, what a weight lifted.....I felt like a whole new baby, and mommy said I kinda look like one too? You like??
Subscribe to:
Post Comments (Atom)
Love you with curls and without. Mamwaw
ReplyDeleteSophia, I agree with your mommy you are the most beautiful baby girl in the world. your curls will grow back but you look GREAT without them. lots of hugs and kisses to u little Angel..
ReplyDeleteRosa
Sophia you are so beautiful!! Shirley
ReplyDeleteYou are still beautiful! ♥
ReplyDeleteBeautiful little girl and I pray she gets to do everything and more on her bucket list. Sending you all prayers.
ReplyDelete