Making Sure Our Daughter Lives Her Life to the Fullest

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by Jackie Babiarz |

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On Nov. 23, 2010, when my firstborn, Cammy, was 20 months old, a physiatrist clinically diagnosed her with Rett syndrome. I was relieved that someone had finally identified her condition, but equally devastated by what it meant.

I’m not sure if the doctor didn’t know how to convey the impact of the condition or just didn’t know much about it, but they handed me a printout with Google searches about Rett syndrome. It was not a medical pamphlet and did not include reputable information.

The first thing I read was, “life expectancy up to 20 years old.” I remember a feeling of nausea, lightheadedness, and despair.

We have since learned that life expectancy has increased for people with Rett syndrome. Still, we’ve vowed to give Cammy the best life possible, making sure however many years we have with her are full of amazing memories. If she’s going to have a shortened life, she’s going to live that life.

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What We’ve Learned Since Our Daughter’s Diagnosis

Cammy is now 13 and has been living life to the fullest.

Upon reflection, her life has actually been accelerated compared to most. When Cammy was 3 years old and in preschool, she had her first “boyfriend” and received many kisses from him. Oliver has loved and protected Cammy since they met in March 2012.

While many kids receive their driver’s license at 16, with some being lucky enough to get their own car, Cammy received her own wheels when she was 3. Granted, it was a wheelchair, but she had her own ride nonetheless.

Some people never meet their idols. Not only did Cammy meet her idol, professional hockey player Duncan Keith, when she was 5, but she also was featured alongside Keith in a video as part of the Chicago Blackhawks’ #WhatsYourGoal campaign in 2015. Nowadays, many children hope to be YouTubers and create viral videos. Cammy and Keith’s video went viral within hours, and is still one of the most viewed Blackhawks YouTube videos.

Cammy must have been Keith’s good luck charm, as the Blackhawks won the Stanley Cup that spring and Keith won the Conn Smythe Award for most valuable player in the playoffs.

make the most of life | Rett Syndrome News | Hockey player Duncan Keith holds Cammy and kisses her on the cheek. Both are wearing Chicago Blackhawks jerseys.

Pro defenseman Duncan Keith kisses Cammy after filming a video for the Chicago Blackhawks #WhatsYourGoal campaign in 2015. (Photo by Jacqueline Babiarz)

Most people go to acting camps and theater schools in the hopes of being seen on TV. The raw talent Cammy displayed in the Blackhawks video led to her landing a commercial for grocery store Fresh Thyme Market in 2020. The producers filmed in our kitchen and included footage of our family cooking and eating dinner.

At just 13, Cammy has done more than most people do in a 70-year lifetime. She’s been backstage to meet Italian opera singer Andrea Bocelli, wrestled with UFC fighter CM Punk, chatted on the phone with hockey legend Bobby Orr, and been kissed by Duncan Keith numerous times. She’s participated in a clinical trial to further Rett syndrome treatment. She’s flown in planes and hot air balloons, water-skied, done indoor skydiving at iFly, and ridden in a motorcycle sidecar.

Cammy and Jacqueline meeting opera singer Andrea Bocelli backstage after a 2016 concert. (Courtesy of Jacqueline Babiarz)

Cammy still has many goals and aspirations on her bucket list. For instance, she hopes to model mascara one day, since her eyelashes are what people tend to notice first upon meeting her. She’d also like to run the first food truck library.

We will keep giving her as many experiences possible while we still can. Cammy’s accelerated life has truly made us understand phrases like carpe diem, YOLO, and “Life is not measured by the number of breaths we take, but by the moments that take our breath away.”

Cammy certainly takes my breath away every time she smiles from the incredible life she’s living.


Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.

Comments

Vincent Rampino avatar

Vincent Rampino

Informative and terrific! Cammy is a superhero to me! We will continue to fight the good fight until Rett is kicked to the curb!

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