I shared Charlee's journey with Hirschsprung's Disease on Tom's Hirschsprung's Podcast...with Tom's permission, here is the interview!

Charlee has been having ongoing medical issues for a year and a half. We have seen multiple doctors and referred to GI Specialists who ran many tests and procedures but still could not determine the root cause. We were told by multiple doctors that it had nothing to do with her Hirschsprung's Disease. (She was diagnosed at 3 days old and had a life-saving surgery at 8 days old). After doing our own extensive research and finding a community of parents, caretakers, and people with the Disease we found the # 1 recommended Hirschsprung's Disease doctor in the country, Dr. Wood and reached out to him. We had several phone calls with him and his team prior to our trip to Ohio and they were so knowledgeable and supportive.

On September 11th, we traveled to Nationwide Children's Hospital in Columbus, Ohio to see Dr. Wood and the team at the Center for Colorectal and Pelvic Reconstruction (CCPR). Charlee had an exam under anesthesia where Dr. Wood found that she is missing about 80% of the dentate line.

We are grateful for our team at Nationwide and feel supported, finally. We are still processing what the next part of our journey looks like and we're trying to give ourselves grace along the way. 

To learn more about Charlee's journey, please check out an update video I shared here, www.instagram.com/robyn_lynne. I also plan to share about our experience staying at the Ronald McDonald House while in Ohio. I cannot say enough about how amazing they are.

More updates to come! Our girl is so brave, and she will not be defeated.

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