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When we found out that Max had Congenital Bilateral Perisylvian Syndrome (CBPS) we searched the Internet to find out what that meant and to find other families that we could talk to, but we couldn’t find anything. At the same time, I was working with Colorado Children’s Hospital to help them discover the best way to reach out to parents with fetal conditions that required surgery within 72 hours of being born.
During this research phase, I had to interview parents that had children born with rare diseases and conditions, and a lot of those parents told me that they could find medical research on what the condition was, but couldn’t find information from an actual parent. They wanted to know what to talk to someone who went through what they were going through; they wanted to talk to someone to help them understand what was ahead of them… but they couldn’t find it.
This is what inspired me to create this blog.
I’m not an expert in CBPS, I’m just a mom that loves her kid and her family, but I was inspired by talking to these parents. I wanted those few of us that are families of children with CBPS to have a place to learn, and the only way I knew of doing that was to tell you our story.
This blog is our story, our family story, about CBPS and it is our hope that we can help other parent’s looking for information get the help they need. But, we would love to hear your story, for you to share your story, and help other families that stumbled upon this blog know what to do next. If you have a story to share, please, contact us below.