Russell's Story

“We did not just find answers for our son. We helped build a foundation so every family could find theirs.”

Russell was born in 2000 via cesarean section at 36 weeks, weighing 3 pounds 14 ounces with an extremely low platelet count. He spent four weeks in the NICU, and his early years were marked by multiple heart defects (PDA, ASD, VSD — all self-closed), polymicrogyria, and feeding challenges that required an NG tube for 11 months followed by a G-tube.

In 2015, whole exome sequencing finally identified the SON gene mutation, giving his family the answer they had been seeking for 15 years. By then, Russell had already achieved a remarkable milestone: at around age 10, he graduated from his G-tube and began eating by mouth after years of feeding clinic work.

Russell's parents channeled their experience into action, helping to create the ZTTK SON-Shine Foundation. Their journey from isolated diagnosis to building a global community shows the power of families coming together around a shared mission.