This topic is about a mother who has finally connected with other families in the United States who are living with Cloacal Exstrophy Sequence, a rare condition that her son also has. This connection has brought her a sense of understanding and relief that she couldn't find elsewhere. Here are some helpful insights and advice from her experience:

1. The connection with other families was made through personal outreach rather than a public website. By reaching out to a known ostomate, author, and comedian, she was introduced to someone in the exstrophy community, which led to further connections. They now keep in touch via email and Facebook.

2. If you have contact details or methods for connecting with others in the cloacal exstrophy community, consider sharing them in forums or groups. This can help others who are searching for support find it more easily.

3. Having peers who share the same condition is incredibly valuable. While general ostomy forums are helpful, parents of children with this condition often have specific questions that may not be addressed by adult patients.

4. Sharing personal experiences, perhaps through a blog, can be a great way to guide newcomers. It also highlights how much more information is available today compared to the past.