When my oldest child, Cammy, was born on March 10, 2009, I imagined her at certain ages. I pictured her at 4 riding a two-wheeler for the first time. The 10-year-old version would have a sleepover with her friends on her golden birthday. The 13-year-old would start to talk…
When my daughter Cammy was 5, she participated in a clinical trial at Boston Children’s Hospital that was supported by the International Rett Syndrome Foundation (IRSF). We traveled from our home in Illinois to Boston and back multiple times in 2014 and 2015, and met many incredible people along the…
When my daughter Cammy, 12, made it her goal to skate with professional hockey player Duncan Keith, the results exceeded all of our expectations. Cammy’s goal, which I shared on social media, was chosen to be featured as part of the Chicago Blackhawks’ #WhatsYourGoal campaign in 2015. The production…
When our daughter Cammy was almost 2 years old, she was diagnosed with a rare disorder called Rett syndrome. Among the things Rett can steal from our children is their voice. In our community, we often play a game in which we ask, “If our child could have…
When my daughter Cammy was diagnosed with Rett syndrome at 20 months, I thought about all the life events she would never get to do. What came to mind first were the big things — having children, getting married, getting her driver’s license, and living on her own.
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