MECP2 in Our Lives
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 and school. MECP2 typically brings serious symptoms beginning in early childhood, including seizures (which become intractable), a weakened immune system, recurrent respiratory infections, and loss of ability to walk or talk. Charlie's medical symptoms are becoming increasingly more severe as he ages, 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 the future! Thanks to the hard work of many, human clinical trials are now a reality. You can read more about specific research, including study results and academic papers, on our Research Page.
​
What's next?
Charlie's MECP2 Duplication Syndrome was diagnosed early, allowing us to support research and work against the devastating effects of this disease. We hope you will follow us on Facebook & Instagram to see Charlie's amazing progress, and contact us for more information!
