How is Charlie?

Charlie struggles to complete many of the daily tasks we take for granted, but he is making great progress through intensive therapy. Many MECP2 patients begin to see serious symptoms in early childhood. These symptoms include severe seizures, a weakened immune system, recurrent respiratory infections, and loss of ability to walk or talk. We are thankful that Charlie has not been plagued by the most serious medical symptoms that can come with this disorder, and we are working to help him overcome the developmental issues he faces. Learn more about his journey in this article from Texas Children's Hospital, where he receives specialized care for the symptoms of MECP2 Duplication Syndrome.

Tell me more about the research.

MECP2 research is groundbreaking and gives us hope for Charlie! Thanks to Dr. Zoghbi and her team, there is a path to human clinical trials in the near future. You can read more about specific research, including study results and academic papers, on our Research Page.

We have the chance of a lifetime!
Charlie's MECP2 Duplication Syndrome was diagnosed early, enabling us to help by participating in research and therapy. We hope you will follow us on Facebook & Instagram to see Charlie's amazing progress, and contact us for more information!