Overcoming Challenges with Kindness, Resilience and Enthusiasm: Sylus’ Story

Before he was even born, Sylus was already fighting the odds. Today, he stands as a powerful symbol of strength and hope — having proudly served as the 2025 Children’s Miracle Network Local Champion. Children’s Miracle Network raises critical funds and helps provide millions of pediatric treatments each year through partner hospitals like Valley Children’s, ensuring children across our community receive the care they need.

Sylus’ mom, Sarah, knew early on that Sylus would face challenges. She was told 18 weeks into her pregnancy that her baby had myelomeningocele, a severe form of spina bifida, a congenital birth defect involving problems with the spine, spinal cord and surrounding nerves. In Sylus’ case, it meant that part of his spinal cord and nerves formed outside of his body in a fluid-filled sac — a condition that also caused the fluid in his head to build up and expand his skull bones, a condition called hydrocephalus.

This diagnosis brought uncertainty and fear, but from the moment Sylus and his family arrived at Valley Children’s Hospital, they were never alone. Immediately admitted to the NICU upon birth, he underwent surgery led by Pediatric Neurosurgeon Dr. Patricia Clerkin to close the opening in his spine and relieve the pressure on his brain.

“Valley Children’s physicians and staff were amazing,” Sarah said. “You have to be a special kind of person to work in that environment, and nobody ever made me feel alone. Every doctor, nurse and staff member was amazing. You don’t realize the impact these people have on your life until you’re in it.”

Thanks to Valley Children’s actions, from diagnosis to surgeries and ongoing treatment, and a testament to Sylus’s own strength and resilience, he has not only overcome many hurdles but grown into a good-humored, kind and adventurous 10-year-old.

With support from the hospital’s donor-funded Adaptive Sports Program, Sylus has done more than most other boys his age, including water skiing and kayaking, playing ice hockey and rock climbing.

“Since Sylus has become involved with adaptive sports, he has gained so much confidence in himself and has really enjoyed meeting new friends,” said Sarah. “This program has given him opportunities to be with other kids who may be facing similar circumstances.”

Overjoyed to be named our 2025 CMN Local Champion, Sylus and his family became the face and voice for pediatric patients in our community, sharing their story, raising awareness of the lives changed at Valley Children’s and serving as symbols of hope, perseverance and gratitude.