Sophia C.
Kentucky
Birth Date -  November 17, 2011

Main Diagnosis -  Batten Disease

THEME: Color Pink
Biography

After a healthy pregnancy and complication free delivery, Sophia Grace Crawford was born on November 17, 2011 and was instantly loved. She was healthy and happy. At two months of age, she began having seizures. Our first hospital stay resulted in the neurologist telling us that she was perfectly fine and nothing was wrong but my husband and I knew better. We made the decision to take her to a larger hospital in Cincinnati. The first available appointment was three months away so we took her to the ER, circumventing the system just a bit. She was admitted that day and stayed for two weeks. After that, we spent weeks in and out of the hospital for the next eight months. We were told many times that her brain was constantly in a seizure and that her seizures were the result of a very rare disease that may never be named. On August 8, 2012, after a routine MRI to check a vitamin level, we received the most dreaded phone call for all parents. We had stopped at a restaurant for lunch after leaving from the MRI when the neurologist told us that Sophia was dying. The feeling of getting that information is one that cannot be explained. The closest I can describe is your heart being ripped apart. We were told that Sophia has Batten Disease. Batten Disease is a rare, genetic disorder that has no treatment, no cure, and is always fatal. Sophia suffers from constant brain seizures and sometime body seizures, she has Cortical Visual Impairment which is a form of blindness, severe lack of muscle tone. She does not smile, laugh, recognize her mommy or daddy, cannot speak, and can no longer eat/drink by mouth. She had a G Tube placed in July 2012. Hospice Palliative Care was initiated in September 2012. We have precious little time left with Sophia and it is our mission to create as many memories as we can with Sophia and to help Sophia raise awareness to this terrible disease.
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