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.

Friday, November 11, 2016

Nicholas Bacon

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My five year old travels under an alias, an assumed name.  He saves this alias for certain situations when adults ask him what his name is ...
Thursday, October 6, 2016

"Hi Diya"

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Every once and a while in this hectic rare disease life you get to witness someone else being incredibly beautiful. You witness a loving hea...
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