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An Ordinary Day: Kids With Rare Genetic Conditions

Life can present challenges that seem insurmountable. Children are not exempt from this, but often through their innocence and willpower we can find inspiration and hope. An Ordinary Day features unforgettable photographs set against intimate conversations, documenting the lives of 27 children living with rare genetic conditions. The book invites us to connect with kids like Ethan, a nonverbal seven-year-old who learns to sign to communicate his needs, five-year-old Madison who has taken her first […]

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Playing The Rare Disease Card

BY LUKE ROSEN Parenting a kid with special needs requires a lot of writing. It seems like I’m constantly writing, which is ok  because… well, I’m a writer. Sitting at my desk typing a blog post is far less stress-inducing than the painful daily scribble that comes along with a rare genetic disorder. Early Intervention requests; reminders that doses changed because of a seizure yesterday; letters to the mayor about the ramp our building is […]

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The Durrett Family – Finding the Normal Button

Around age 2. We knew something was going on with our little Payton. She wasn’t talking as much as her sister. It took her almost 17 months to walk. We always called her our quiet child. During this time, we started looking into tests and procedures to uncover what’s going on with Payton. Started with the pediatric doctor and neurologist, genetics and metabolic. Around age two and a half, maybe 3, an EEG revealed she […]

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Moving Forward

Disease-stricken pastor and writer Rusty Kuhn wants to be healthy again. The husband and father of two misses restoring vintage cars and writing. Rusty must fight against Erdheim-Chester Disease to regain his life. “I was very close to death. My condition continually worsened leaving me wheelchair bound and in need of assistance with almost everything I did.” Erdheim-Chester Disease placed Rusty in a wheelchair at the end of 2014. After publishing his third book, Reclaiming […]