Columns

We Have a Teenager in the House

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…

Why We Look Forward to International Rett Syndrome Conferences

In April, we will attend our fifth International Rett Syndrome Foundation (IRSF) conference since 2011, when our daughter Cammy was diagnosed with Rett syndrome at 20 months old. We have attended each conference with open hearts and minds. We have specific goals each year, but our overall agenda has…

Updating My Daughter’s IEP as COVID-19 Guidelines Change

As a parent, I consider myself well informed about the school system. I was a high school teacher before I had kids, my oldest sister is an early childhood educator, and my middle sister is a school physical therapist. Both of my sisters have been instrumental in helping me to…

Our Daughter Is 1 in 10,000

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.

A Chance Encounter With a Stranger Made a Lasting Impact

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…

Our Daughter Goes From Zero to 60 in a Flash

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…

From a Wheelchair to Skating With a Hockey Pro

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…

Why My Daughter’s Goal Was to Skate With Hockey Player Duncan Keith

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…

My Daughter Inspired Me to Go Back to School

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…

What We’ve Learned Since Our Daughter’s Diagnosis

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…