Reaching for the Stars
Ten-year-old Samantha loves to paint and draw, and her favorite subject in school is art. But what makes the spirited fifth grader’s love of art most inspiring is that when Samantha started kindergarten five years ago, she had never even written her name.
Diagnosed with arthrogryposis when she was a few days old, Samantha’s hands were turned out, her feet were turned in, and her arms were unusually close to her body at birth. She spent the first 10 days of her life in the neonatal intensive care unit at Chippenham Hospital where doctors began casting her limbs in an effort to move them while the bones were still soft. At five weeks, Samantha had her first appointment at Children’s Hospital of Richmond where she received hand splints and began regular occupational therapy sessions.
Occurring in approximately one in every 3,000 births, arthrogryposis is a muscle disorder characterized by multiple joint contractures or limitations in the range of motion of a joint. In most cases, hands, wrists, elbows, shoulders, hips, feet and knees are affected, although in more severe cases, every joint including the jaw and back may be involved. While arthrogryposis is not a genetic condition, it can be caused by insufficient room for normal movement in the uterus, atrophy of muscles during development, malformation of the central nervous system and spinal cord, or abnormal development of tendons, bones, joints or joint linings.
Samantha’s mom, Pam, said she had a “perfectly normal pregnancy” and had no indication of her only child’s medical condition until birth. While her doctors couldn’t give a definitive cause for Samantha’s arthrogryposis, they suspect she may have had limited mobility in utereo.
In addition to regular physical and occupational therapy sessions, Samantha has already had four surgeries, including foot and hip procedures, to loosen her muscles and help her walk. As she grows, she’ll also have additional surgeries on her feet, legs, hands and arms. The hand and arm surgeries won’t be performed until Samantha is at least a teenager however because of the extensive physical therapy required after those procedures.
Since her first visit to Children’s Hospital of Richmond, Samantha’s therapists have helped her take her first steps, ride an adapted tricycle and learn independent living skills like feeding and dressing herself. Pam remembers how at age four Samantha learned to walk using a pony-type walker, progressing to a regular walker with hand splints and finally on her own. While Samantha relies on a wheelchair for longer trips, she can walk short distances without assistance.
Sandy Timok, PT, PCS has been Samantha’s physical therapist for the last few years. During their biweekly sessions, Sandy and Samantha practice gait, balance and general endurance training using the treadmill and an adapted bicycle, Samantha’s favorite part of the appointments. As part of Samantha’s medical team, Sandy works with Samantha’s doctors and her occupational therapist, Stephanie Arnold, MS, OTR/L, to understand Samantha’s overall goals and incorporate those goals into her physical therapy sessions.
“She has come an amazing way in her therapy,” Sandy said. “She really is an inspiration to our younger patients.”
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