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.

Sunday, October 4, 2015

Raising Rare Boys Long Drive II Survive Competition Update!


Posted by acherrstrom at 7:29 PM No comments:
Email ThisBlogThis!Share to XShare to FacebookShare to Pinterest
Newer Posts Older Posts Home
View mobile version
Subscribe to: Comments (Atom)

Jack

Jack

Nicholas

Nicholas

Alex

Alex

Related Links

  • National MPS Society - MPS II
  • National MPS Society

Subscribe To raisingrareboys.blogspot.com

Posts
Atom
Posts
All Comments
Atom
All Comments

About Me

My photo
acherrstrom
View my complete profile

Blog Archive

  • ►  2020 (1)
    • ►  October (1)
  • ►  2019 (1)
    • ►  March (1)
  • ►  2018 (4)
    • ►  October (1)
    • ►  July (1)
    • ►  April (1)
    • ►  January (1)
  • ►  2017 (10)
    • ►  September (1)
    • ►  August (2)
    • ►  July (1)
    • ►  June (1)
    • ►  April (2)
    • ►  March (1)
    • ►  February (1)
    • ►  January (1)
  • ►  2016 (12)
    • ►  December (3)
    • ►  November (1)
    • ►  October (1)
    • ►  September (1)
    • ►  May (2)
    • ►  April (1)
    • ►  February (3)
  • ▼  2015 (15)
    • ►  December (1)
    • ►  November (1)
    • ▼  October (1)
      • Raising Rare Boys Long Drive II Survive Competitio...
    • ►  September (1)
    • ►  August (1)
    • ►  June (1)
    • ►  May (3)
    • ►  March (3)
    • ►  February (1)
    • ►  January (2)
  • ►  2014 (15)
    • ►  November (4)
    • ►  October (1)
    • ►  September (1)
    • ►  July (1)
    • ►  May (1)
    • ►  March (3)
    • ►  February (2)
    • ►  January (2)

Popular Posts

  • We can help you
    We can help you. We understand if you don't understand a lot about Autism. We're all continuously learning. We understandable if y...
  • Do you still have Hunter Syndrome?
    Nicholas Do you still have Hunter Syndrome? Are you still sick? Dan and I often think about how well Nicholas is doing.  You wouldn...
  • It Takes Two
    It takes two to see Hunter Syndrome in a whole new light. I wrote this blog because I googled the following: " how common is it for...
  • Nicholas Bacon
    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 ...
  • A Life Lesson from Great Wolf Lodge
    Alex wiped out from water park fun At first this might seem like a little bit of a superficial story but I can assure you this has great...
  • Why We Live in Cleveland - Part II
    The Real Story - Part II When we arrived in Cleveland, we didn't have a home to move into yet.  My grandma graciously vacated her cond...
  • Why We Live in Cleveland - Part I
    Alex The Real Story - Part I The first obvious conclusion is we came for the pierogies.  Anyone...and I mean anyone who has been at th...
  • Our IEP Experience
    Fresh off our first annual review of Alex's progress on his Individualized Education Plan (IEP), setting some goals and the plans for su...
  • Yesterday
    Yesterday was one of those meaningful life experiences that I hope I never forget. Yesterday was beauty. Yesterday was humanity.  Yesterday ...
  • We're # 2
     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 ...
Awesome Inc. theme. Powered by Blogger.