We had a rummage sale this past weekend. A 5 year old and his family came to the sale. We spoke with them for a few minutes about a rare illness the boy has been struggling with and I would like to find out more to try to help.
At 17 months he had open heart surgery and proudly showed to me his scar. He now has arthritis and has to be on a liquid diet because solid foods will not digest.
They said this illness is so rare that I believe only 2 people in Wisconsin have it. And I want to say 400 worldwide.
I have been scouring the internet and cannot find anything sounding like what he described. I do know it was a very long name and the anagram was something like NIMBY or MINBY or something LIKE that...but those showed no results. I do know he is being treated by a rheumotolgist and that it is an autoimmune issue.
If anyone has any thoughts or info I would so appreciate it. He told me the name and mentioned the boy has a webpage...but I stupidly didnt write it down. And I think I will be able to find the page if I know the name of the illness.