Transforming Moments

Samantha’s Story

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 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.

Early Successes

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, 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.”

Advancing to the Smart Suite

Because Samantha’s goals also include being more independent, Stephanie works with Samantha using the assistive technology and adapted equipment available in the hospital’s Smart Suite, which opened in March 2006. The 600-square-foot Smart Suite features a kitchen, bedroom, bathroom and work space, all of which have been adapted so that people with a variety of disabilities can independently participate in daily living activities. The kitchen has an oven with a side-opening door, an adjustable-height table, and cabinets that can be pulled down to countertop level to accommodate wheelchairs. Other rooms have voice-activated environmental control units for lights and appliances, a power-operated bed with a variety of accessibility options and a bathtub/shower with different types of faucets.

Using various assistive technology devices, Samantha is learning to prepare snacks and meals, brush her teeth and hair, adapt clothing for easier self-dressing and use adapted equipment like a dressing stick and reacher to dress herself, skills that will become increasingly important as Samantha enters the pre-teen and teenage years. Stephanie has also helped Samantha incorporate assistive technology devices such as a dictation system into her school day. Although she has an aide to help during the day, Samantha has learned to use a co-writer to take notes and a computer to dictate long essays and assignments.

“The Smart Suite has given us ideas to further adapt at home,” said Pam, who wants to see her daughter become as independent as possible. “It’s shown us what’s out there” in terms of adaptive equipment, including the dressing stick, reacher and toothbrush holder. Pam also hopes to add an adjustable height sink and counters and motorized shelves, similar to those in the Smart Suite, in her family’s kitchen in the future.

Stephanie agrees. “The Smart Suite has given Samantha and her mom opportunities to see how much she can do herself.”

As she becomes more independent, Samantha has big dreams for her future. An animal lover, she has seven dogs, one cat and multiple hamsters and wants to be a veterinarian. She also wants to continue honing her art skills.

Traveling the Distance

During the 10 years that Samantha has been visiting Children’s Hospital, she has seen therapists at both the main and Southside therapy center locations. Despite the 90-minute round-trip commute for biweekly appointments, Pam said Samantha wouldn’t be able to get the kind of care she gets at Children’s Hospital anywhere else.

“Children’s Hospital specializes in kids,” said Pam, “so it’s worth the ride. We always get good care and have good people working with us.”

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