Shrieks of laughter and giggles of joy fill the air. A young voice hollers “come and get me” as a blur of excited boy whizzes past. His first bike ride.
Tynan is a 7-year-old boy with an exuberant personality and cheeky sense of humor. He is silly, kind, and adventurous like many kids his age. However, Tynan has overcome tremendous adversity since birth. He was born with a rare
disease called S turge-Weber Syndrome. Over vascularization of blood vessels on his left side caused calcification of the brain, a port-wine birthmark, and glaucoma. As the calcification progressed he experienced intractable seizures which were unable to be controlled with medications or treatment. The seizures increased and Tynan failed to make developmental progress. He was unable to communicate, eat, toilet, or play without assistance.
At just 4.9 years old, Tynan underwent an anatomical left hemispherectomy in which surgeons removed the left side of his brain. We knew the risks of this procedure: Tynan could completely lose function of the left side of his face and the entire right side of his body. Physical, occupational, and speech therapy services would be needed indefinitely. On the other hand, the surgery had the potential to give him a whole new chance at life. Fortunately the surgery
brought an end to the seizures and Tynan re-learned how to sit up, walk, eat, and talk. He runs, jumps, and kicks a ball. He can lift his affected arm above his head and wave it in the air. He use an arm and leg brace. He struggles with bi-motor coordination and balance. He works hard everyday to build core strength and increase these skills, but without them he cannot ride a typical child’s bike. Although Tynan’s hand and foot control continue to improve, Tynan has a long road until he can ride a bike. A traditional rite of passage for kids his age. When he sees other kids out riding he sadly says, “I wish I had a bike to ride.”Through “Project Mobility”, Tynan was provided the opportunity to experience a bike ride. We found an adapted bike that worked for him and would grow with him over time. It would provide him opportunity to increase core strength, leg and hand strength, coordination, and balance. As a family we could go for rides in the forest preserve like other families. He could go for a bike ride with his friends. But most importantly, we could again witness the smile that lit up his face as he experienced the freedom that only comes from riding around with the wind in your hair - going FAST like his favorite character from “Cars”, Lightning McQueen.