A Team Behind Every Step: Samuel’s Cerebral Palsy Journey

When Samuel was born at 31 weeks, his parents knew they were facing an uncertain road ahead.

In his first weeks of life, Samuel experienced significant medical challenges. When he was 3 weeks old, he was diagnosed with hydrocephalus, and doctors warned his family that he was very likely to develop cerebral palsy.

After spending 65 days in the neonatal intensive care unit, Samuel began receiving physical and occupational therapy through state-supported early intervention services.

“We knew how important it was to start right away,” his mother, Justine, said. “I kept asking for more because I knew he would need more support.”

When Samuel was 22 months old, he and his family saw Shawna Arsenault, M.D., a physical medicine and rehabilitation doctor at Shriners Children’s Northern California, where he received an official diagnosis of cerebral palsy.

Finding the Right Support

Cerebral palsy primarily affects Samuel’s left side, where he experiences high muscle tone throughout much of his body, causing tightness that impacts mobility and everyday activities.

Over the years, Samuel’s care team at Shriners Children’s Northern California has helped him gain greater independence through a combination of therapy, orthotic care, botulinum toxin (Botox) injections and surgery. Dr. Arsenault has given Samuel injections every four to six months to help reduce muscle tightness.

The results, his mother said, were transformative.

Before treatment, Samuel’s tight hips and thighs made it difficult for him to sit comfortably and move naturally. After his first injections at age 4, his family noticed immediate improvements, including the ability to sit upright.

Samuel is also a frequent visitor to the Pediatric Orthotic and Prosthetic Services department. Since his first orthotics appointment in 2020, Samuel has received 12 pairs of ankle foot orthotics (AFOs) that stabilize the ankle and foot to keep them in a proper, aligned position.

His favorite part is helping choose the visual designs for his AFOs. Pirates, skull-and-crossbones, construction themes and video game controllers have all appeared on his braces over the years. The family especially appreciates working with orthotist Renee Vonfeldt, whom they specifically request whenever possible.

Today, Samuel is also under the care of Vedant Kulkarni, M.D., assistant chief of orthopedics. In October 2024, shortly after his sixth birthday, Dr. Kulkarni performed tendon-lengthening surgery that addressed the challenges caused by tight muscles and drop foot.

Prior to surgery, Samuel often walked on his toes, crossed his legs while walking and frequently tripped, even while wearing his AFOs.

Recovery from the surgery was difficult. Samuel spent four weeks in casts and spent a lot of time in physical therapy with Laura van Houtryve, PT, working to rebuild his foundations of movement.

Although the recovery was difficult, the results made it worthwhile. Today, Samuel can run more independently, use the restroom on his own and navigate daily activities with greater confidence.

Since surgery, his need for Botox has also decreased – he only needs them in his left arm.

Discovering New Possibilities

What also had a lasting impact was BikeFit, an adaptive cycling program at Shriners Children’s Northern California that gives children bicycles tailored to their needs and teaches bike and street safety.

After surgery, Laura encouraged Samuel to participate when a spot became available. The family happily made the two-hour drive each week for the cycling lessons.

Samuel enjoyed learning to ride his own bike, playing with physical therapy students, and often asks when he can return to the hospital to ride his bike again.

Today, he regularly rides his bike and enjoys the independence it provides.

Big Plans for the Future

Samuel affectionately calls Shriners Children’s the “toy hospital” and proudly tells people he is “a Shriners kid.” He has developed close relationships with his care team and already has big plans for the future.

“Samuel says he wants to be a ‘Shriners doctor’ when he grows up,” Justine said.

Now 7 years old and entering second grade, Samuel spends his days doing what many children his age love to do.

He is passionate about baseball and recently completed his third season of Little League, where his father serves as a coach. He also participates in Junior Giants baseball and is eager for more opportunities to play.

When he’s not on the field, Samuel enjoys video games, spending time with his cousins and helping train his dog, who is preparing to become a service dog.

Depending on the day, Samuel may use a walker, wheelchair or AFOs, but his family focuses on what he can do, rather than what he cannot. In recent months, he has begun using his walker more frequently and continues to make strides toward moving independently.

Looking back on the journey from a premature birth and uncertain prognosis to the active, determined child he is today, Justine is grateful for the care that has helped him thrive.

“As a mom, it’s important for my child to feel supported and included,” she said. “Shriners Children’s does that. The compassion and encouragement we have received has meant so much to our family.”