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When my 12-year-old daughter Cammy was diagnosed with Rett syndrome at 20 months old, we were told it’s a rare neurological disorder that primarily affects girls because it’s caused by a gene mutation in the X chromosome. The condition is estimated to affect one in 10,000 girls worldwide.
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…
Things escalate quickly in our house. What we thought would be another typical day last Friday turned into us calling 911 and admitting our 12-year-old daughter, Cammy, to the hospital. I kept Cammy home from school that day because someone in her class tested positive for COVID-19 again. Cammy is…
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…
In preparation for the 2008-2009 hockey season, the Chicago Blackhawks created a marketing campaign called “One Goal.” Players and staff members stated their personal goals for the year to showcase the individuality of each team member. In 2015, the Blackhawks organization extended the campaign to fans, inviting them to…
A couple days after my daughter Cammy turned 3, she went straight from early intervention to school. I had prepared her for the transition, but I was not fully prepared. I told Cammy over and over, “It’ll be great. You’re ready.” But I knew…
At 2:45 p.m. on Jan. 7, 2011, we received a phone call confirming that our daughter Cammy has Rett syndrome. Since then, our lives haven’t been the same. We’ve grown so much in the past 11 years. We’ve learned to grieve the loss of a “perfect” child. The…
When you have a child with special needs, part of the grieving process is acceptance. I don’t mean accepting your child’s diagnosis of Rett syndrome. I’m talking about accepting your new normal, and accepting the decisions you have to make about what is best for your family. This…
Have you ever searched for a gift for nonverbal, nonambulatory child who can’t use their hands? Not much shows up. People with Rett syndrome are difficult to shop for. When my daughter Cammy was younger, stuffed animals filled her gift bags. Then, it was socks, infinity scarves, and…
In 2019, my two daughters, who are two years apart, attended different schools. My neurotypical daughter Ryan’s school had a winter concert, where all grades sang songs prepared during music classes. My older daughter, Cammy, who has Rett syndrome, did not have a winter show at her…
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