My daughter and I met a lovely young mom of two adorable little girls, one appears to have BBS. I was so glad that my daughter Greta was able to talk to her about how she went about getting a diagnosis for Ian, and then to give her referral info regarding other specialists. I think this mom was able to see that the condition is hard to understand, but with good support, good medical specialists, and good schooling, BBS kids can be happy and their medical issues can be dealt with as they come along. And that although "different" BBS kids are delightful and bring so much more to us than we give to them! Experiencing the world through Ian's experience of it has taught me a lot about living in the moment, enjoying what you've got, not what you want, and that life is full of fun and funny moments :-)
I think we need a BBS support group in Omaha!
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