El equipo detrás de cada paso: El recorrido de Samuel con la parálisis cerebral

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.

Descubriendo nuevas posibilidades

Otro programa que tuvo un impacto duradero fue BikeFit, un programa del Hospital Shriners para Niños del Norte de California que proporciona a los niños bicicletas adaptadas a sus necesidades específicas y les enseña seguridad vial y seguridad sobre la bici.

Tras la cirugía, Laura animó a Samuel a participar cuando se desocupara una plaza. La familia hacía con gusto el viaje de dos horas cada semana para que Samuel tuviera sus clases de ciclismo.

A Samuel le gustaba aprender a andar en su propia bicicleta y jugar con los estudiantes de fisioterapia y siempre pregunta cuándo podrá volver al hospital para volver a montar en bicicleta.

Hoy en día, monta en bici con regularidad y disfruta de la independencia que le proporciona.

Grandes planes para el futuro

Samuel bautizó con cariño al Hospital Shriners el “hospital de juguete” y dice con orgullo que es “un niño Shriners”. Ha entablado una estrecha relación con su equipo de atención médica y ya tiene grandes planes para el futuro.

“Samuel dice que quiere ser ‘médico de Shriners’ cuando sea mayor”, dijo Justine.

Samuel, que ahora tiene 7 años y va a empezar segundo de primaria, pasa sus días haciendo lo típico de muchos niños de su edad.

Le apasiona el béisbol y recientemente completó su tercera temporada en Little League, donde su padre es entrenador. También participa en la liga juvenil de béisbol Junior Giants y está deseoso de tener más oportunidades para jugar.

Fuera del béisbol, Samuel disfruta de los videojuegos, pasa tiempo con sus primos y ayuda a entrenar a su perro, que está camino a convertirse en perro de servicio.

Dependiendo del día, a veces Samuel usa un andador, una silla de ruedas o su dispositivos AFO. La familia presta atención a lo que él puede hacer, en lugar de lo que no puede. En los últimos meses, ha empezado a usar con más frecuencia el andador y sigue progresando hacia la movilidad independiente.

Justine hace memoria de todo el camino recorrido, desde un nacimiento prematuro y un pronóstico incierto hasta el niño activo y decidido que Samuel es hoy, y desea agradecer la atención que le han ayudado a salir adelante.

“Como madre, es importante que mi hijo se sienta apoyado e incluido”, dijo. “Shriners Children's logra eso. La compasión y el aliento que hemos recibido han significado muchísimo para nuestra familia”.