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.