Yvette Holmes: Parenting Through Rare Diagnosis and Building Global Support for TBR1 Families

Send us a textIn this episode of Complex Kids, Simple Solutions, Michelle welcomes Yvette Holmes, a devoted mother and rare disease advocate based in the Netherlands, whose son Jack was one of the first individuals diagnosed with the genetic disorder TBR1.Yvette shares the emotional and isolating road that followed Jack’s diagnosis, and how that journey led her to create a powerful online community through the TBR1 Facebook group, now a global lifeline for families navigating similar rare paths.Together, Michelle and Yvette talk about the challenges of raising a child with an ultra-rare condition, what it means to step into advocacy as a parent, and how Yvette’s shift from a 20+ year career in finance to disability care reflects a deeper calling to serve families like her own.This episode is about courage, connection, and the power of creating what doesn’t yet exist—for your child, and for others. Whether your child has a known diagnosis or not, Yvette’s story reminds us of the strength that grows from community.👤 About the Guest: Yvette Holmes is the mother of Jack, one of the first children diagnosed with the rare genetic disorder TBR1. She is the founder of the TBR1 Facebook group, a global support network for families impacted by this rare condition. Yvette left a 20+ year career in financial services to work in disability care, where she now blends personal experience with professional purpose to support children with high needs in the Netherlands.