By Amber Reynolds As we started to learn more and more about Harper’s diagnosis, Okur-Chung Neurodevelopmental Syndrome, we started to understand that our precious nonverbal daughter, Harper, might never learn to speak. One of my saddest moments as a mom was thinking I may never hear my daughter tell me she loves me. Harper...
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We Had No Idea Rare Disease Day Reflection from a Rare Warrior Mama, Amber Reynolds: When Harper was born we had no idea about genetic diseases, developmental disabilities, and that sometimes “healthy” babies have underlying problems that show up well after birth. We had no idea that 9 months later our lives would be...
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by Amber Reynolds As today is Rare Disease day, I wanted to share my sweet Harper’s story again. To honor this day I want to highlight her very rare syndrome, Okur-Chung Neurodevelopmental Syndrome. Many of you are aware of our journey and trying to find a diagnosis for Harper. We knew within Harper’s first...
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