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This is about Devon Clark, born 2/26/93. Devon was diagnosed with Hunter Syndrome when he was 2 1/2 years old. Devon lives in Portland, Oregon where he is seen by the metabolic clinic at Emanuel Childrens Hospital along with a multi-disciplinary team at OHSU. Devon has a younger brother Mason who is seven.
What is Hunter Syndrome?
Hunter syndrome is a rare genetic disorder that primarily affects males. Males with Hunter syndrome are missing a specific enzyme needed for the breakdown of polysaccharides. Without the enzyme, there is a continues storage of polysaccharides causing severe damage to major organs,joints and brain function. Hunter syndrome is terminal and there is no cure although recently treatment has become available.
In July of 2006, FDA approval was given for Elaprase, a synthetic form of the missing enzyme. Treatment using the drug Elaprase is given weekly in the form of I.V. infusions. Devon will start his first infusion on January 25, 2007.
Click Here to visit the MPS Society Website
Click Here to read more about Elaprase
Here are pictures from Devon's first day of skiing @ MT.Hood Meadows. Thomas was our instructor who coached Devon along.
Please join Devon's corkboard
Journal
Tuesday, July 29, 2008 1:06 PM CDT Today we are at ERT, and Devon seems to be tolerating his increased rate max of 50. We spoke with a Physiatrist as our Genetics doc really wanted to look into Botox for the heel cords. She doesn't feel that at this stage Devon would benefit from Botox but that maybe, heel casts might help. We worry about trying that because his balance is so unstable as it is that the casts would be very difficult to walk on but then walking on the casts is the only way to stretch and lengthen the heel cord while in the casts.
We had a great time this year at Camp Prime Time. We had seven Hunter boys all together, Peter, Devon, Jake & Josh, Andrew, Christopher and Elijah. We had a cabin with a nice deck on it next to the playground so we pulled the top bunk mattress to the deck for Devon to lie on. He was so peaceful just looking up to the trees and taking his naps.
Devon also really has enjoyed his new day care, The ARC of Washington County. It has helped to keep him active and stimulated through out the day until school starts again. We are excited to have Mason back home, he went to visit his grandparents in Georgia and Florida. He will flying home direct on Tuesday from Atlanta to Seattle.
Read Journal History
Hospital Information: Doernbecher Childrens hospital
3181 sw sam jackson park rd
Portland, OR
Links: http://www.elaprase.com
http://www.youtube.com/watch?v=snT4eKVxbkI Mason at Mt. Hood
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