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!

Meet the Parents :)

Someone recently asked if there was a post on the blog about Jacob and me. What a novel idea! :) It seems like somewhere along the way we lost our individual selves and simply became Sophia's Mommy and Daddy. Not that there is anything wrong with that, just the opposite in fact. There is nothing in the world that we'd rather be! But, to honor the request..... some information about us, the parents.
Jaime--I grew up in Western Kentucky with a loving family, two older sisters. Had a great childhood. My first job was working at a grocery store as a cashier, which I hated! I attended college at Murray State University and graduated with a Bachelors Degree in Psychology, minor in Criminal Justice. During my college years, I worked at a treatment hospital for children with mental illness and behavioral problems. That was a very hard job; there wasn't a day that went by that I didn't have to break up a fight between kids. After college, I worked as a Support Coordinator for a behavioral health agency for adults with mental illness. It was a job I should have loved with my background in Psychology but I did not love it at all. I eventually took a job with the Department of Corrections as a Classification Officer and worked in a prison for about a year. I moved to Lexington, KY and took a job as a Support Coordinator again, for a different agency; this time, working with children. But I missed my job in Corrections so I took a job with the Detention Center in Fayette County, Kentucky. There, I met and fell in love with my husband, also a Corrections Officer. Fast forward about nine years, and now I am a Sergeant supervising two areas: Classification and Inmate Services. I have a great group of people that I work with and I am very blessed with my job.
Jacob--Jacob's father was in the military and this afforded Jacob the opportunity to live in Germany for some time as a child. He grew up in Western Kentucky before moving to Lexington, Kentucky. Jacob has a loving family, his parents are still happily married and he has two younger sisters. Jacob was blessed with two children of his own at a relatively early age, Jordan and Dyllan, now 13 and 8 years old. Jacob took some classes at Eastern Kentucky University but it proved difficult to continue on to a degree due to his need to work and support his children. Jacob worked at a bank prior to taking the job with the Detention Center in Fayette County, Kentucky. Jacob's father is a police officer and his mother works at the Detention Center also so it's kind of "in the blood". Jacob is also a Sergeant at the Detention Center and supervises the Intake area, where inmates are first introduced to the facility by police officers.
We were engaged for exactly one year and got married in 2006. Jacob has joint custody with his two boys and they stay with us on most weekends. I had always wanted a child and in 2011, Sophia Grace Crawford was born. My pregnancy and her delivery was completely normal and healthy, no complications. Sophia's first two months of life were filled with love, awe, and the feeling of being complete. In January 2012, Sophia began having jerky movements that were soon diagnosed as seizures. We spent eight months, in and out of the hospital with Sophia having tests and procedures completed to find a way to help our baby girl. We were told that her disease was probably so rare, that we would never find a diagnosis. But we continued in our quest and kept the hope that one day, a doctor would be able to heal our darling baby. On August 8, 2012, following a routine MRI, we received a call from Sophia's neurologist on our way home, and were given the devastating news: Sophia had a terminal illness that has no cure and is always fatal. Since then, we have grieved deeply, gotten angry, cried, cursed....but never gave up. Sophia is the most precious gift and we are extremely blessed to have her. Our goal now, is to help Sophia to have a fulfilling life, a meaningful life, to keep her happy and comfortable. With that goal in mind, we want to help raise awareness to BATTEN DISEASE, to find a cure, to help these beautiful children that suffer needlessly each and every day of their short lives. WE WILL NOT STOP AND WE WILL NOT QUIT.

3 comments:

  1. Sophia is blessed to have parents like you two, and you two are blessed to have such a beautiful little girl. Always look at the bright side of every day, especially with a situation like yours. I had one similar, but mine ended way to fast. My son, Micheal Monroe Maes -11/11/08 was in uterine and doctors knew something was wrong, he was born 20 weeks to early and was only here with me for a very few hours. Cherish each minute like it's your last and never forget! Best of luck to you and your family on this heart-wrenching journey.

    Samantha L. Maes

    ReplyDelete
  2. Thank you Samantha. I'm so sorry for the loss of your precious Michael. A hurt that never heals... I appreciate your kind words.

    ReplyDelete
  3. I could just sit here all day long and look at these beautiful pictues of Sophia

    ReplyDelete