Previously published in Rite Up, 2024 – Issue 1.
Three-year-old Marley, of Palmer, pulls up to her physical therapy appointment at Scottish Rite for Children in her self-propelled wheelchair, lovingly named Marley’s Moo. “Marley has never met a stranger,” says her mother, Christina. “Everyone becomes her friend, and her presence fills the room.”
When the family got the wheelchair, Christina decorated it like a cow to encourage Marley to use it. Now, she maneuvers easily, wherever she wants to go. When she is not in her wheelchair, she gets around by crawling, but in physical therapy, she is learning how to walk using a gait trainer — an assistive device similar to a walker.
Marley was born with myelomeningocele, a form of spina bifida in which a fluid-filled sac containing neural tissue protruded from her back because the neural tube in her spine did not close completely. When she was 2 days old, a surgeon closed her back, and at 2 months old, a specialist referred her to Scottish Rite for Children where she receives comprehensive care through the Spina Bifida clinic.
While spina bifida primarily affects the nervous system, it can also impact related body systems, such as bowel, bladder and mobility. Marley’s multidisciplinary team includes experts from Pediatric Developmental Disabilities, Orthopedics, Urology, and Physical and Occupational Therapy. “They see her from head to toe,” Christina says. “Scottish Rite has become our hub, and it’s convenient because they line up all of our appointments on one day.”
Spina bifida affects Marley’s mobility, causing developmental delay. She started crawling at age 2. Then, the family built parallel bars to help her learn to stand and walk. “She was doing great on that, but for some reason she did not want to be in her walker,” Christina says.
At Scottish Rite, physical therapist Meredith Porteous found creative ways to motivate Marley to use her gait trainer. She also recommended adjustments, providing armrest attachments to help keep Marley upright and more comfortable. “Meredith has been great with Marley,” Christina says. “She’s on her hands and knees right along with her, helping her. Marley has really come around and asks to be in her walker. It’s been a game changer.”
After moving forward in her gait trainer, Marley is learning how to turn. “Scottish Rite has been a guidepost for us every step of the way,” Christina says. “We’re really hopeful for Marley’s mobility journey. We’re ready to see her conquer the world.”
