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I was on the Queen Mary today and Amy Roloff from Little People Big World was there. I got an amazing opportunity to speak with her and ended up telling her about Joey and his story. She wants me to send her an email with his story, updates, and info on his disease!
I just read Joey's story. Very touching and heart breaking. I was lurking and seeing if there was a place where my niece fit in. She has Hirchsprung's Disease.
Thank you. We are so grateful for where Joey is today. Please feel free to post here. As near as I can see Hirchsprung's Disease is considered rare, so I wanted to also let you know about Rare Disease Day US
February 28 is World Rare Disease day. 24 states have signed proclamations recognizing this day, and many families I know plan to do a balloon release on this day as well.