Riley was diagnosed with TBRS in 2020 while battling a 9 month high fever. In his 6 years of life, he has undergone general anesthesia 6 times, had infinite pokes and prods, at minimum 24 ultrasounds, lived with the norm of PT, OT, and speech therapy weekly, and continued to be the happiest kid around. His love to adventure, wrestle, swim, ski, climb, and play (floor is lava) is contagious.

TBRS is a rare genetic disease characterized by pathogenetic in the DNMT3A gene. Individuals with TBRS have overgrowth - along with a plethora of other health and neurological struggles/differences. Like many, part of Riley's presentation is low stamina. He goes 100 mph and then drops and struggles with stairs. Weight and activity level will be a constant battle throughout his life - just like his other "building blocks" (TBRS diagnosed individuals) peers. And as we know, one of the best preventative measures we can take with our health is keeping our body moving.

For this reason, each April, the TBRS Community comes together to challenge our warriors and community members to get outside and move their body.

Support Riley and the TBRS Community by making a donation today. Help us raise funds to increase research so we can find understanding and treatment solutions.