From the moment I saw the movie Star Wars as a child, I became a life-long fan of warriors. Watching these specimens of super-human strength overcome incredible odds against the toughest of enemies gave me hours of endless joy. In fact, many of my childhood scrapes and bruises came from my attempts to wield a light saber and use the force against the invisible enemies that lived in my closet. In my eyes, a warrior was someone with no fear, no doubt and who always knew exactly what to do in every situation. Fast forward a few years….

If you follow Zoe’s Story, you know that my daughter Zoe is the inspiration behind our organization. Her diagnosis in 2016 devastated me and there were plenty of days that I had no idea how I would move forward. It was then that Zoe changed my definition of a warrior. You see, in the midst of all that we were going through, Zoe NEVER complained. She lived every day like the one before and went on living her life as normally as she could. At times, she had fear. Hearing that you have a disease that has no known cure can do that to a person. At times, she doubted that she could be viewed as normal by her friends because her outward appearance (i.e. the swelling, casts and slight slouch because of her vertebrae lesions) did not reflect her inner strength. But again, she NEVER complained. It was then that I realized the following about true warriors:

  1. Warriors have fear, and expressing it openly takes more strength than hiding behind it.
  2. Warriors have doubts, but they also have hope. It is the hope that allows them to become beacons of light during times of darkness. 
  3. Warriors may not always know what to do, but their ambition to keep moving forward leads them to make the best choice for their situation.

My daughter is a Warrior. The members of our journal writing group are Warriors. The parents and caregivers who support our children in the rare disease community are Warriors. Warriors may not always win, but they continue to fight and they never give up hope.

It is to all of the Warriors that I have come across that I dedicate the inspiration behind the meaning of our Zoe’s Story logo. The color gold represents courage. The color purple represents ambition (it’s also Zoe’s favorite color). This is the perfect color combination to symbolize the strength that our CRMO and other Rare Warriors exhibit each day. The pen represents the power of writing, and the upward stars symbolize hope…the hope we have that one day there will be a cure for all childhood rare diseases. 

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