Attention Hirschsprungs Disease families. You are not alone. We were fortunate enough to meet with another family who has a boy with HD. Our respective wives had become close friends thanks to the internet and Facebook.
We met in the place of all places, Disneyland in Orlando. Here is a link to Keaton’s Blog: Eat, Breathe, Poop
We are blessed to have met this wonderful family. We (HD families) are not alone.
Hello. Jag am from Sweden och have a daughter with total HD. She lives with help of CVK och 100% of nutrition goes through it. So I wonder if there are children wich stomi and CVK on this site. Thanks for your answer.
This blog is only about my son who has LSHD so I cannot help you w/ the nutrition issues you are facing. There is a wonderful supportive HD group on yahoo and also facebook has at least 5 HD groups. I’m SURE there are people there who can help you with this. good luck