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, April 25, 2018

Do Your Research

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Do your research. These are three of my least favorite words because they're usually used when someone is trying to educate you by poli...
Monday, January 22, 2018

Design Thinking a Rare Disease to its Death

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In late October 2009, I was picked by a disease to become a lifetime observer of Hunter Syndrome, a disease that wants to kill my children....
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