I know that several of your following this blog have experience with short gut and intestinal transplant yourself. I wanted to let you know that, with some encouragement from Patrick’s doctors, we just created a support group for families of kids with Short Gut. Many of you have offered to share your experiences with me… I’d be greedy if I kept that all to myself.
The website is www.shortgutsupport.com. We have a message board and a growing collection of information about Short Gut Syndrome.
COTA allows one link to a page with information about your child’s diagnosis. When I started looking, I couldn’t find a single site that really covered Patrick’s condition. So – I created it instead. So, for those who are just interested in learning more about Short Gut and intestinal transplant, have a look, too. Maybe it can help fill in some of the blanks.
Patrick Hoopes 