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Kraig Klenke 
Welcome to my journal! I write in here to keep my family and friends updated about me. Please come back to visit often…we all love to read what you write in the guestbook and know that you are checking on me.
I am 16 years old and got the diagnosis of Mucopolysaccharidosis Type II (MPS II) a few weeks after my third birthday. You can call it “Hunter Syndrome”, if that’s easier! My body is missing an enzyme to break down complex sugars, so it stores them in my cells. Yeah, it’s really rare…only 1 in about 150,000 people have it, and with MPS II, it’s in boys about 99% of the time.
Anyway, on August 31, 2006, I got to start ERT. That’s Enzyme Replacement Therapy. It goes through an IV and into my body through the port-a-cath in my chest. It’s not much fun (it takes about six hours!), but it makes me feel a lot better. I love Elaprase!
Thanks again for stopping by my page! You can also look at the Bowl4Kraig website for even more stuff about me and my family.
Journal
Thursday, August 6, 2009 1:13 PM CDT WOW, it's been a loooong time since I have updated my journal. Thank you to those who still continue to check in on me and sign my guestbook.
I am still receiving my weekly ERT at the hospital, in fact I am sitting here getting my infusion right now. Today is #138, at the end of the month will mark my 3 year anniversary since starting Elaprase. I hate going to the hospital every week and sitting for hours with a needle in my chest, but I keep on doing it because I know it does help me feel better.
I will be going to UNC to see Dr. Muenzer and Dr. Escolar sometime next month. I am very excited because I will get to see a lot of my friends while I am there.....Leslie, Terri, Laurie and Barb. I think my buddy Andrew is going to be there, too, hopefully his mom is able to get his appts. scheduled at the same time as me.
School starts in just 2 weeks, hard to believe summer is almost over. I did go to camp again this summer. It was a lot of fun, but I was very tired by the end and happy to be back home and sleeing in my own bed.
I am hoping I get to go the Disney conference in December. I love to see my friends and what better place than Disney. Hopefully my dad will be back to work soon so that we can all go.
Guess that's about all I have to say for now.
Until next time,
Kraiggy
Read Journal History
Hospital Information: Home
Links: http://www.mpssociety.org The National MPS Society, Inc.
http://www.bowl4kraig.com Kraig's bowling-a-thon website
http://mpsforum.com/forum/index.php MPS Forum
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