Sydney K.

Condition: Leukodystrophy
City, State: Beaverton, OR
Club: Aloha High School Sparrow Club Service Hours:
Date Adopted: 4/01/2014

Sydney's Story:

Sydney, a five year old little girl with beautiful red hair, glowing blue eyes and a contagious smile, is dressed for success and always has a beautiful hair bow that matches her outfit. Beyond the shining princess exterior, there is a warrior on the inside. She is fighting a battle with a rare genetic disorder called Leukodystrophy. There are 40 known forms of Leukodystrophy, yet Sydney’s condition is baffling doctors across the country and currently remains unidentified.

In July of 2010, when she was just over one and a half years of age, Sydney woke up from a nap with a stiff arm. From that moment, her life totally changed. It became difficult and eventually impossible for her to walk. She lost her ability to talk, and then was not able to swallow or eat real food. After several MRIs, lumbar punctures, CT scans and genetic testing, doctors came to the conclusion that her myelin sheath is broken down. In other words, the nerves that allow her to move and speak do not function properly. This impacts her peripheral nervous system and makes it impossible to perform daily functions on her own.

Sydney gets around by wheel chair and has learned some sign language. She often uses a speaking device to help her communicate. Of course she has her good days, yet she suffers from headaches and body pains, and often spends nights in the hospital. Despite her struggles, Sydney brings happiness and joy to everyone she meets.




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