I don’t have a lot of time to blog right now. But I am searching for something/someone and hoping you may be able to help.

We had a rummage sale this past weekend. A family (5 year old boy, mom, dad and grandfather) came to the sale. We spoke with them for a few minutes about a rare illness the boy has been struggling with. 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. I do know that they live in Caledonia and the father is 32 years old. They said this illness is so rare that I believe only 2 people in Wisconsin have it. He is being treated at Children’s. He told me the name of the disease and also mentioned that his son has his own webpage through Children’s. But I cannot remember either of those and never asked for his name.

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 can help me out, I would like to write a story about this little boy and his struggle. If you have any info, please let me know!!

Thanks guys 🙂


2 thoughts on “Looking for Caledonia Boy for Story – Can You Help??

  1. Yes, I think that is the only one they use. But the site doesnt have a search (dangit) so I cant just put in Racine or something to narrow it down. You have to have a name. SO I am hoping to be able to either Google the words caringbridge AND the name of the disease and am hoping that may work – or at least get me closer to finding it.

    Thank you!!!

  2. I know one of the blogsites that childrens uses is caringbridge.com I’m not sure if that’s the only one but I know 2 people that were/ are being treated there and they both have sites on caringbridge

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