I am supporting the Courage Classic for patients like Amelia.
My friends Kristen and Chris discovered something was a little different with their daughter Amelia when she was around a year old. After extensive testing they discovered Amelia was born with Rett Syndrome, a rare and devastating neurodevelopmental disorder that impacts nearly every aspect of an individual’s life, including their ability to speak, walk, eat, and even breathe. Rett is a genetic disorder caused by a spontaneous pathogenic variant in the MECP2 gene. When the MECP2 gene does not function properly, it can cause issues throughout the entire body, leaving individuals understanding more than they can communicate.
Every individual with Rett is unique and so are their symptoms which begin as early as 6 months old when parents see their child miss development milestones and lose abilities they had already gained. Though Rett occurs most often in females (approximately 1 in 10,000 births), boys can have Rett too.
Kristen and Chris have been champs on their six-year journey and are literally my heroes, providing the best life possible for Amelia and fighting for the Rett community at large. Nearby Children’s Hospital Colorado has been a blessing and all donations our team raises will be supporting their efforts and research to help patients like Amelia.
