Trinity J.

Condition: Leukodystrophy
City, State: Medford, OR
Club: Abraham Lincoln Elementary School Sparrow Club Service Hours:
Date Adopted: 12/11/2012

Trinity's Story:
Upon first meeting Trinity, one might not suspect anything out of the ordinary, medically speaking. However, this beautiful, intelligent, and sociable eleven-year-old has had to learn to adjust to a life full of medical challenges.

Trinity’s parents first noticed that something was not right when she was just a baby. At 15 months, Trinity was still not crawling, and she was two and a half years old before she finally was able to walk. Around this same time, Trinity was officially diagnosed with leukodystrophy, a progressive genetic disorder that led doctors to believe that Trinity would not live past 6 years of age.

Leukodystrophy is a result of problems with the growth or maintenance of the myelin sheath, which is the protective material that insulates nerve cells. When the myelin sheath is damaged, the transmission of electrical signals between neurons is disrupted, which can lead to numerous problems with voluntary functions such as walking to involuntary functions, such as a heartbeat.

This nervous system disorder has affected Trinity in various ways throughout her life, and has progressed as she has gotten older. Her heartbeat fluctuates inconsistently and she often experiences chest pain, along with low blood pressure and oxygen levels. When this happens, Trinity gets very tired, sometimes to the point of needing a wheelchair in order to rest.
Trinity also struggles with some sensory issues, as well as problems with digestion, and the ability to sleep. She often experiences pain (neuropathy) in her hands and feet and at times, finds it physically uncomfortable to be touched.

While there is no cure for leukodystrophy, Trinity and her family travel to Portland twice a year and to Stanford once a year for numerous tests and scans in hopes of discovering more about this lifelong disorder.

Although her condition does keep her from doing many activities, Trinity does not let these medical challenges keep her from enjoying life. She loves school and her classmates at Abraham Lincoln Elementary (her school requested her as their Sparrow) and she enjoys spending time with her family, playing on the computer, creating Lego stop-motion videos, and watching TV.


The Kimmel Family Foundation
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