Brodie

IMG_4668

Brodie is the sweetest 6 year old around. He loves being outdoors, giving kisses, books, and TV. He is non verbal and struggles with communicating his wants/needs, eating/drinking, seizures, repetitive behaviors, excessive self biting, potty training, and no fear. Without a cure, Brodie will need assistance daily for his entire life. Finding a cure would be life altering for our family. For now, we focus on making sure that Brodie is safe and loved.

As you know, Brodie has a rare, currently untreatable, genetic condition called Creatine Transporter Deficiency. There are only about 350 cases in the world—all children that will not lead a normal life. It’s been 21 years since CTD was discovered and the needle is finally starting to move on research.

Last year, our parent group raised $94k for Gene Therapy research and drug development. While this may seem like a lot, much more is needed to fund these expensive projects.

Walk for Strength 2022

Join us on August 20th for the Association for Creatine Deficiencies’ 7th annual Walk for Strength. Team Brodie will be walking at Longs Retreat in Ohio at 6:00 PM.

14D2DCF5-231D-4B86-8B4A-A00CD4635574