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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, October 7, 2008 9:35 PM CDT Well, so far high school is going well for Devon. He has a really hard time waking up for the 9am school bus so quite often I just drive him after he wakes up.
We saw Neurology regarding seizures and it was decided the current medication was making Devon too sleepy so were slowly adding a different one called Lamictal then we'll slowly stop the other, Topamax. On Lamictal you start at a very low dose and within 13 weeks be at the max. Devon has been about 62 pounds since he was around seven years old but now since were into week four on Lamictal he's gained almost four pounds. Were watching it close as that is too much strain on his organs not to mention the added weight and me trying to lift him anymore isn't going so well.
Devon has continued to do well on Elaprase, and thankfully he sleeps through the majority of it. Thanks for checking up on Devon, hope to have more good news to come.
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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