Cetarra Lewis was born with a rare chromosomal disorder that has robbed her of speech and caused her to suffer frequent and severe seizures.
Her condition, known as Angelman syndrome, is caused by a deletion of the 15th chromosome, which regulates neurological processes including balance, movement and verbal communication. As a result, Cetarra is also unable to walk upright without assistance.
Although Lewis, 23, happily crawls to wherever she needs to be while at home, she spends much of her time in a wheelchair for safety’s sake, said her mother, Melinda Lewis.
A program through the organization United Cerebral Palsy of Sacramento and Northern California is enabling Cetarra to explore the world on her own two feet.
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The program, called Mobility Opportunities Via Education, or MOVE, utilizes a walker-type device to grant individuals with physical limitations the ability to walk upright. The device, known as the Rifton Pacer Gait Trainer, is made to adjust to fit clients of all ages and adapt to their individual strength levels, providing various levels of support.
With only two Pacers, MOVE currently serves about five clients each week.
“The goal is to get our clients out of their wheelchairs to enable them to be independent, self-sufficient and deliberate in their actions – things they often aren’t used to being,” said Loie Rhodes, UCP program director.
UCP of Sacramento and Northern California serves more than 4,700 clients with developmental disabilities – only 14 percent of whom have cerebral palsy – across four campuses through a variety of services and day programs, including MOVE. Through MOVE, clients such as Cetarra enjoy assisted mobility for up to an hour per day five days per week.
Cetarra demonstrated her delight one Thursday morning in November as she roamed UCP’s North Highlands campus using the Pacer, occasionally pausing to play with leftover spiderweb decorations from Halloween or to admire the garden she planted. All the while, an overpowering smile spread across her cheeks.
Melinda said, most notably, she’s noticed an increase in the respect others pay her daughter while using the Pacer.
“You see what a difference there is in how people treat Cetarra while she’s standing and making eye contact with them, as opposed to when she’s sitting in her wheelchair,” Melinda said.
“When people walk up to someone in a wheelchair, they might think the person can’t hear them, or they can’t see them, or they don’t know many things,” Rhodes said. “But when someone is standing up, all of a sudden they are given respect and dignity, as they too are actively involved in the world.”
Individuals with conditions that require them to sit in wheelchairs for prolonged periods of time often experience higher rates of organ complication and a higher risk of developing illnesses such as pneumonia than the general population, Rhodes said. With less time using wheelchairs, MOVE participants experience an increase in respiratory and circulatory function, and become sick less frequently.
Since participating in MOVE, Cetarra has experienced significant improvements in her health and physical strength. Each week, she increases her capacity of walking further for longer durations, Rhodes said.
With the successes of the program, UCP hopes to expand MOVE and add new Pacers to facilitate additional clients.
State funding supports a majority of the program but excludes equipment expenses. One Rifton Pacer Gait Trainer, complete with necessary accessories, costs upward of $5,000, making it difficult for UCP to afford the additional device through its donation-dependent budget.
UCP of Sacramento and Northern California is asking Book of Dreams readers to help by helping purchase one Rifton Pacer Gait Trainer for MOVE.
“Through the MOVE program, Cetarra and so many kids like her have gained mobility, which is such a vital part of freedom most people generally don’t even think about,” Melinda said. “My husband and I are so grateful for the UCP team. They spend so much time working with special needs kids who, at the end of the day, aren’t capable of giving back. To me, that’s true altruism.”
Needed: Funds for a Rifton Pacer Gait Trainer, which helps people with disabilities gain more mobility.