Troy Wyman via Crowdrise
April 28, 2011
BENEFITING: Cystinosis Research Network, Inc.
EVENT DATE: May 01, 2011
Cystinosis is a rare disease that primarily affects children. Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine.
Kacy lives life to the fullest...she also lives with Cystinosis. Living with Cystinosis is a balancing act. It involves careful and frequent dosing. It is a crazy regime run by the clock, around the clock. Kacy doesn't see it that way. Taking medications are blips in her day, mere pauses that happen in between school, play dates and soccer games. They are frequent, yet brief, moments that are taken to sustain life.
Every day is a new adventure and ever day brings new possibilities for her. She is our biggest teacher on how to live our lives; to see the best that every day has to offer and to find joy in every little moment.
We always say that she was meant for great things. Watch out world!
Learn more about Cystinosis at www.cystinosis.org