Princess Sophia

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 Own Journey

I'm on my own Journey. I'm sure that I always have been, but either didn't take the time to realize it, or didn't even believe it. I've known my daughter, Sophia, was on a Journey for about a year now. And I consider the steps she takes on her Journey and I talk about her Journey and I publicize her Journey. But my own Journey? Never considered it. But here I am, most certainly. I've never been an outgoing person. I've always had lots of friends but more because they approached me, rather than me approaching them. My outlook on people and human nature, quite honestly, has always been more on the negative side. I feel very "in tune" with human nature; I'm sure my degree in Psychology just adds to that! I feel like I know immediately if a person is good or bad. I work in an environment full of criminals, constantly scheming and manipulating and lying. And just when I think someone has turned themselves around, bam! They'll lie to you again, and you'll fall for it again. So if someone had asked me a year ago, if people were inherently good or bad, I wouldn't hesitate with my answer: people are inherently bad. People do bad things and they are mean and they are nasty and they are evil.
And as I sit here and write this, I realize how silly I am to have believed that my Journey just started; my Journey began long ago and maybe its just taken me this long to realize it. Like I worked up to this point. And I once again consider how much my daughter has taught me. She has taught me patience, understanding, and love for others. Yes, love for others. Tonight, on Sophia's Journey Facebook Page, I mentioned two items that I thought would be good for Sophia. Within minutes, a stranger had ordered and paid for the items, and had them ready to ship to my Sophia. That is amazing. It is undeniably one of the most amazing things. And to that wonderful woman and her husband, it may just be a way to help out this little girl. But to me and my Sophia, its the chance to help Sophia learn to hold up her head and an opportunity for Sophia to have a little fun on a trampoline (another bucket list item). Sophia has taught me to accept others, to love others, to think highly of others. Now, go ahead. Ask me if people are inherently good or bad; I won't hesitate with my answer: people are good, very good, inherently good.
Thank you God for my daughter, thank you for this Journey.


  1. Isn't that wonderful that those people you don't know would do this for Sophia. It makes us realize how much God loves us too. With so many bad things happening it is good to hear about acts of kindness and goodness in people. And Sophia is touching so many lives she is a blessing from God.
    Love, Mamaw

  2. Hi...I have been following yours and Sophia's journey since i first seen your page. Then I clicked on this that you shared tonight 1/29/13. I do believe EVERYTHING happens for a reason...and yes I do believe there is good as well as evil...which makes some kind of balance. I also believe that on your journey and you thinking everyone was evil...God wanted to show you through the eyes of one of his children and the ways of other people just how nice people can be. He wanted you to know that which is why he sent you the precious gift you have which is Princess Sophia. She is such an adorable little girl. Such a precious rare gem sent to you by the heavens above. And she is so lucky to have you as her mommy...God chose you for a reason...and i find it amazing that you have since figured that out...a lot of people wouldn't have seen that. Bless all of you and I plan on walking with you on the journey as long as you allow me to.

  3. Praising God for the work He is doing in you!!

    I will pray that you will see more of the Father's love through His people.

    Praying and praying for Sophia and rejoicing in the work Father is doing.