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

  • Update from our Chicago Visit
    Our little football team converged on Chicago in early December to participate in the Natural History Study clinical trial, see Genetics,see...
  • For Alex on Your Birthday
    Your eyes are beautiful blue pools of pure water like those found on a mountain. Your eyes when you were a baby were striking. There was n...
  • 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...
  • 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...
  • 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...
  • To somebody else...
    I've been really deep into life problems lately.  I'm deep in the trenches of problems wondering if I will every see the top of the ...
  • 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...
  • The Defender of Mankind
    When we were picking a baby name for Alex (Alexander), Dan really wanted to name him Jace, but a Jack and Jace were just too close.  We kep...
  • Do you hear what I hear?
    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...
  • Birthdays
    It was his birthday too. Icy.  Post ball play pic in the snow. He looks so annoyed! Yesterday was my 2nd birthday in my 4th decade (tr...
Awesome Inc. theme. Powered by Blogger.