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…
The IncRETTibles – a Column by Jacqueline Babiarz
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…
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…
Recent Posts
- What we’ve learned in 29 years as Rett syndrome parents
- Acadia to challenge negative opinion on Daybue approval in EU
- I’ve been on the lookout for the look that says, ‘Enough is enough’
- When the smallest things prompt the most poignant reflection
- Altered sensitivity to pain starts early in life in Rett mice: Study
- Rett syndrome linked to early disruptions in brain cell maturation
- Rett syndrome disrupts brain development in specific areas: Study
- European regulators unlikely to recommend approval of Daybue
- My daughter and her wheelchair taught me lessons in accessibility
- Visual problems in Rett may be reversible, mouse study shows