Raising Rare Boys

We're a family fighting to save two of our boys from MPS II, Hunter Syndrome. Hunter Syndrome is a rare genetic disorder. Our sons are missing an enzyme that allows their body to purge waste cells causing cells to build up and damage joints and vital organs. Our blog is about raising "rare" boys who have and will overcome much adversity and will have a unique perspective on life due to their experiences.

Wednesday, January 22, 2014

Do you hear what I hear?

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Does Alex hear what we hear?  For two years we weren't sure.  It's very common for kids with Hunter Syndrome to have hearing loss...
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Wednesday, January 1, 2014

Update from our Chicago Visit

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Our little football team converged on Chicago in early December to participate in the Natural History Study clinical trial, see Genetics,see...
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