Baby Jade's Journey
On November 10th 2000 our Baby Girl was born beautiful and seemingly healthy. After she was about 3 months old Slade and I began noticing a few changes in her. Changes like severe arm stiffness, fist clinching, and eventually began rapidly losing small milestones. We than began taking her to the doctor with no luck at finding an answer for her behavior. With her worsening we searched for another doctor. We finally found a doctor who would listen. Not only listened, but knew herself that something was severely wrong. Not knowing the exact diagnosis, she sent us for an MRI and upper and lower GI. Before we received the results Jade began to rapidly become sicker. She cried constantly which quickly turned to a non stop yell. (36 straight hours) We rushed her to Ft Worth Texas to a Children's Hospital. After a nine day stay we got to go home, still unsure of what was wrong. One week later we returned to the neurologist, scared but optimistic about the results. I guess the only words I can remember the doctor saying was "Krabbe Disease". The fear was so great that I blocked out everything else he had said. After a few days the fear wore off and I began researching this horrible word. The more I read and learned the more afraid I became. Eventually I figured out it wasn't just the disease taking days out of her life, but so was I. Simply by spending more time learning about the horrible things to come, instead of what wonderful things were already here. I decided then not to let this horrible word "Krabbe" symbolize what our family is about. Instead I used it to help make us stronger. Now 8 months later and with all its ups and downs Jade is still fighting her disease. We will do so as long as we possibly can. Although Jades life could be cut short, the time we have with her will last forever. I thank God every day for my two children they are true blessings. So I constantly remind myself not to think of Jade as a "KRABBE BABY" to just think of her as Jade. Since she cant speak with her voice anymore, she now speaks with her eyes. She doesn't need a voice to speak to our hearts. Just like when your doing something she doesn't like she will cringe at you letting you know to stop. She also licks and smacks her lips to tell you she's hungry. Many people cant understand how we know what Jade wants or needs. Its simple, you don't need a voice to be heard, only a heart that will listen. Once we figured that out we realized, were not cursed because of this disease, we are blessed because of this child. So on behalf of Jade we would like to thank all of you for being so caring and supportive during our hard times. We also want to thank you for letting us tell Jades story. Hopefully another family can benefit from our experiences. I truly believe that sharing helps us heal. Once you get over the actual shock you realize there are other families who understand what your going through. Now that we are one of those families, who understand, we hope you find as much joy in your special child as we have.
Sweet Baby Jade earned her angel wings on January 5, 2003 at home with her family. Please keep Jade's family in your prayers!
Slade & Shawn Marie
A special heart felt Thank You to Dr.Magda Fawzy MD. and her girls in the office. Jade would not be here today if not for them.
You can Also visit Jade's other web site at: www.caringbridge.com/page/babyjadesjourneys
Return to Krabbe's