An adaptive bike gave my late daughter a sense of normalcy

When my late daughter, Cammy, was diagnosed with Rett syndrome at 20 months old in 2011, we grieved the loss of our perfect child. After learning about Rett and everything it can rob a child of, we worried Cammy would never have the opportunity to enjoy many typical childhood experiences. One of those was riding a bike.

Rett syndrome imprisons a child in a body that doesn’t do what they want it to do. Cammy was unable to walk, talk, use her hands, or do all the other things most people take for granted. We quickly learned that we would have to adapt everything ourselves or find equipment that was adapted for Cammy’s needs.

In 2013, when Cammy was in preschool, the nonprofit organization Project Mobility held a social media contest sponsored by The Bike Rack to give away an adaptive bicycle. I made it my job to recruit votes for Cammy to get her an adaptive bike.

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Thanks to our huge social media presence and an overwhelming amount of love and support, Cammy won by a landslide. This was huge for us because that specific adaptive bike cost at least $3,500. It had a tall back and a five-point harness that kept Cammy safely positioned. We would place her on the seat, strap her feet into the pedals, and push her using a handle on the back of the bike.

Although Cammy wasn’t propelling the bike on her own, she was getting a great workout. The cycling motion stretched her legs and helped improve her range of motion, balance, trunk control, and blood circulation.

Aside from the physical benefits, the adaptive bike gave us more control over Rett syndrome. We felt like we were fighting back against all of the things that the disease had taken from Cammy and our family. We were doing something a typical family would be doing, and Cammy was hitting a milestone. Not only did the bike enable us to be more social, but the exercise also gave Cammy a welcome break from her usual daily therapies.

This adaptive bike gave our family a piece of normalcy that we’d been missing. Cammy could now ride a bike down the sidewalk with her little sister, Ryan, who pedaled along on her tricycle. At 6 months old, Ryan had surpassed Cammy, who was 2 at the time, in every physical ability. So my favorite part of biking was watching Ryan ask her big sister to slow down so she could catch up. Cammy would smile and happily wait for her little sister. We’d all been missing that kind of typical sibling interaction.

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.