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
Subscribe to: Posts (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

  • 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...
  • The Kids of America
    ...more specifically the kids of Avon, Ohio At holiday parties, you never know what is going to happen.  Who is going to fall down drunk, ...
  • MPS Awareness Day 2015
  • 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...
  • The Perfectionist & The Rare Disease
    Roll back to December of 2016, it's the end of the year, well over 8 months ago, and I am still thinking about how crabby I was during o...
  • 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 ...
  • Summer
    Surviving our Summer For Mid-westerners, the summer is precious.  You don't survive it.  You welcome it.  It's the season of slo...
  • 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...
  • Raising Rare Boys Long Drive II Survive Competition Update!
  • Oh hey, we're 43
    43 years ago a group of parents gathered at John Hopkins University to support each other and talk about the MPS/ML diseases.* That same mo...
Awesome Inc. theme. Powered by Blogger.