As a parent, there is no greater joy than watching your children grow. Seeing them learn to crawl, then walk. Parents cherish memories of first words, first falls off a bike, and first perfectly executed spirals with a pigskin. Witnessing simple moments of their kid just being a kid is every parent’s dream. But what if this doesn’t happen? What happens when dreams of simple, magic moments are ripped from a parent’s hands?? What happens when the daily life of a family comes to a screeching halt? What happens when your kid can’t “just be a kid”?
Richard and Sheila Carter faced this very question when their son Richmond was born with Chromosome 5q14.3 Deletion Syndrome with MEF2C Haploinsufficiency. MEF2C is genetic material on Chromosome 5, the lack of which results in severe cognitive and physical developmental delays. The Carters pursued all available resources as they focused on improving Richmond’s quality of life. Many of these resources were found through the University of Nebraska Medical School’s Munroe Meyer Institute, which partners with families of children with complex medical needs to provide services and support for the entirety of the child’s life. Through this service, the Carters found physical and occupational therapy centers that would help Richmond develop his motor skills and increase functionality of various body systems. These centers became homes away from home for the Carter family.
At the urging of physical therapists, the Carters began to research the work of Go Baby Go, a national outreach program that provides personalized modified ride-in cars for young children with disabilities. Initially, the Carters politely declined, worried about the endless paperwork and waiting lists usually associated with such programs. The physical therapists were persistent, however. Knowing that “seeing is believing”, the physical therapists brought out the demonstration car, modeled after “Mater” from the Pixar movie Cars, and were quickly able to change the Carters’ minds.
The Carters’ hearts swelled with love as they saw Richmond cruising around their living room for the very first time. With the help of a generous donor, the Carters were given their very own modified vehicle for Richmond. This vehicle contains modifications that allow Richmond to steer, sit upright, and easily start and stop, thanks to the “Big Mac Button” - a large button that acts as the machine's gas pedal.
This vehicle has changed the lives of the entire Carter family for the better. The Carters have two older (extremely energetic I might add) sons. Prior to receiving the vehicle from Go Baby Go, Richmond’s brothers were not able to interact with him on a physical level. As Mrs. Carter said, “if Richmond wanted to engage on that level, it just wasn’t really possible, and they (Richmond’s brothers) had to dumb themselves down in a way.”
The addition of the Go Baby Go car changed this dynamic, however, as Richmond can now play with his brothers on their level. “It is exciting enough for them (Richmond’s brothers) to stay by his side, it is fun enough for them to be a part of it”, Mrs. Carter said. Richmond now drives around in his vehicle while his brothers run, slide, roll, or flip their way beside him. Thanks to Go Baby Go, Richmond now has a sense of both independence and inclusion, something seemingly unattainable for him prior to his car.
Finally, the Carters are able to watch as their three boys play together, without limitations. Mrs. Carter says, “The main joy for me is to see them play at the same physical level. As parents, you take for granted all the little moments with your kids, so this really makes me appreciate the little things with my children.”
For so long, Richmond has been known as “Patient Richmond,” or “Sick Richmond.” However, thanks to Go Baby Go, Richmond can finally just be Richmond. Richmond can shed his “fragile” label while in his vehicle. Richmond can play with his brothers and be a part of the family. Richmond can just be a kid.
Our local Go Baby Go chapter was formed through a mutually beneficial partnership between the Brazos Valley Rehabilitation Center (BVRC) and Avant Garde - College Prep Services. If you are, or know, a family interested in learning more about Go Baby Go’s services, or if you wish to donate toward the build of future adapted powered-wheeled cars, please visit our website at https://brazostherapy.org/go-baby-go/ or contact us at gobabygobrazos@gmail.com.
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