"So", God said, "you want to know the enemy?"
On August 8, 2012, at approximately 2:30pm, Jacob, Sophia, and I were in Florence, Kentucky, eating dinner. We had taken Sophia to Liberty, Ohio for a routine MRI to check her folate acid levels. The only notable part of the MRI was that Sophia woke up from the anesthesia angry! It took me several tries to get her to calm down and just let me hold her. Sophia has had numerous MRIs and had anesthesia many times as well. This was the first time we had seen her like this. Other than that small part of that visit, everything was completely normal.....until my phone rang.
I stepped out of the restaurant because the caller on the other end of the line was none other than Dr. Hallinan, Sophia's neurologist. While we think very highly of Dr. Hallinan, we had never received a personal phone call from her. Dr. Hallinan started the conversation by asking how Sophia was doing. My focus? Sophia has a movement disorder and lately, it had been worse than ever. Lots of twitching, head shaking, scratching and hitting her face. Could we get some medicine for that, I asked. Dr. Hallinan said she would look into prescribing something. Great! I thought. Finally, some relief for us all. But then Dr. Hallinan asked how long until we would be home, because she wanted to discuss the test results. I told her to go ahead, I was ready to hear them. Or so I thought.
Dr. Hallinan said that the results are not good. Sophia has Neuronal Ceroid Lipofuscinoses, more commonly known as Batten Disease. My first question...Is it Fatal? The Answer...Yes.
And with that, our world changed forever.
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!
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