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, February 19, 2014

We're # 2

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 The medicine our boys receive weekly tops the charts as the #2 most expensive drug in America at about +/-$4,000 USD per vial.  We're ...
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Wednesday, February 5, 2014

Top 10 Interesting Situations, Advice & Funny Comments said to us as Parents Managing Hunter Syndrome

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During our journey with diagnosis of MPS II, Hunter Syndrome, and dealing with the daily demands of this disease, we interact with a lot of ...
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