Variety - the Children's Charity has handed out its 10,000th piece of adaptive equipment, following the launch of its My Bike program for Western Pennsylvania children more than a decade ago. Among the families who've benefited is the Parkinson family, whose 9-year-old daughter Maeve has Lamb-Shaffer syndrome, a rare genetic neurodevelopmental disorder that has left her nonverbal. With a communication device, an adaptive bike, and an adaptive stroller — all provided at no cost — Maeve's parents say she finally gets to feel like any other kid.
The milestone was detailed by CBS Pittsburgh, which reported that Variety provides adaptive equipment free of charge to families who qualify. For Maeve, that has meant a communication device that speaks her selected words aloud, letting her use a button loaded with pictures and words to talk. Her mother, Jessica Parkinson, recalled the moment Maeve first said “mom” — she was 6 years old at the time, according to the outlet's report.
A Rare Condition Behind the Silence
Lamb-Shaffer syndrome is caused by mutations or deletions in the SOX5 gene, which plays a key role in embryonic brain development, according to the Children's Hospital of Philadelphia. Roughly 500 cases have been documented worldwide as of 2025. The condition shares overlapping developmental symptoms with autism spectrum disorder, but the hospital notes it is a distinct genetic condition that can only be definitively diagnosed through genetic testing such as Whole Exome Sequencing — meaning many children are initially misdiagnosed before that testing reveals the true cause.
Many nonverbal children use communication devices at school but don't have one at home, per CBS Pittsburgh's reporting — leaving families to communicate through school-issued tools only during the day. Insurance providers and state Medicaid programs routinely deny claims for adaptive tricycles by classifying them as recreational or exercise equipment rather than medically necessary durable medical equipment, according to research published by the National Institutes of Health, since standard medical billing codes lack a dedicated coverage category for pediatric adaptive tricycles.
From a Theme Park Ride to a Safer Walk Home
For the Parkinsons, the adaptive stroller has proven just as essential as the communication device. It has helped the family visit Kennywood and safely walk Maeve home from school, and her father, Rich Parkinson, said it makes those walks home safer. The stroller matters because commercial strollers built for older children and teenagers simply aren't available in retail stores, the family told the outlet.
Variety's own program details flesh out why: the charity's My Stroller initiative provides lightweight, 29-pound foldable adaptive strollers designed specifically to address safety risks such as elopement, or wandering, for children who lack safety awareness, according to Variety Pittsburgh. Jessica Parkinson said watching Maeve use her adaptive bike is fulfilling, and she described the equipment overall as letting her daughter feel like any other child.
Variety's Expanding Reach
Variety's reach today extends across 59 Pennsylvania counties, delivering custom mobility and communication equipment to eligible children, the charity says. Its My Stroller program serves children from age 3 through 21. That footprint grew out of the My Bike program, which launched on November 5, 2012, in partnership with then-Governor Tom Corbett and initially served children with disabilities in the 10-county greater Pittsburgh area, according to WPXI. Variety also has a My Voice communication-device program.
Who Qualifies and What It Costs
Each adaptive bike costs $2,500, adaptive strollers cost $2,000, and communication devices cost $1,200 — all provided at no cost to recipient families, per CBS Pittsburgh's reporting. Variety says many families may qualify for its assistance.
State funding has also played a role in expanding the charity's reach. In 2024, Variety received a $1 million grant from the Pennsylvania Department of Community and Economic Development to support and expand its communication device distribution for nonverbal youth across the Commonwealth, according to Kidsburgh. Variety CEO Tom Baker said presentation days — when families receive their equipment — change the lives of children and families, adding that the gear helps them experience ordinary childhood activities, from riding a bike to visiting a theme park to simply hearing the words “I love you.”
Families interested in applying are directed to Variety's website to check eligibility, since each bike is custom-built for a child's specific disability-related needs. For the Parkinsons, the milestone number is secondary to what the equipment has already given Maeve — a voice, a way to ride alongside other kids, and a safer path home.
