When he was 6 years old, Christopher Dutcher was diagnosed with Mucopolysaccharidosis II (MPS II), commonly referred to as Hunter Syndrome .  Remarkably, at the age of 28, Christopher has a dual MBA in Marketing.  This is remarkable because many of those affected with Hunter Syndrome can have a significant degree of mental and central nervous system impairments .  Fortunately, not everyone is affected by Hunter Syndrome in the exact same way.  Recently, the Global Genes Project (GGP) team had the opportunity to speak with Christopher about his life and goals living with Hunter Syndrome.

How are you feeling?

“I’m stable.  I have what is considered a mild case.  Approximately 2/3 of individuals with Hunters are severe and have delayed development until about age 7.  As they get older, their central nervous system and mental development actually reverses and eventually they will pass away during their teen years.  My CNS (Central Nervous System) is not affected and my brain isn’t affected.”

Does Hunter Syndrome inhibit you in any way?

“I couldn’t read until the 4th grade.  I had special ed for 40 min a day until the 7th grade, but my reading ability did catch up.  I have only about 30% lung capacity.  I get short of breath very quickly.  But, I try to get to the gym 5 times a week.  I usually only make it 3 or 4 times.”

Wow.  What type of exercise do you do?

“I’m very active.  Usually I do strength exercises along with 20 min intervals on the treadmill.”

You were diagnosed at age 6.  What made your body’s reaction to Hunter Syndrome less severe than others?

“I had 7 operations before the age of 18.  And at age 17, I was actually the first test person to be given the drug Eleprase.  This drug halts the progression and provides an enzyme the body is missing.  Eleven years ago, there were 12 patients in the trial, and since the study two people have died.  Both of them were my friends.”

Do you have any siblings?

“Yes.  My brother Cody also has Hunter Syndrome.  We both had a Wish for the Make-a-Wish Foundation.  Cody wanted a trip on a Disney Cruise.  My wish was to play hockey with the Mighty Ducks.”

What have you been doing over the last year? 

“I have received my project management certificate and Six Sigma Green Belt.  I have met with Congressman Howard Coble regarding my support of the ULTRA Act.”

“Due to the rarity of MPS disorders, I attempted to start a charity to raise awareness and realized it was a bit more intensive than I had imagined.  So, I recently had an opportunity to speak to children at their school discussing anti-bullying.”

Have you been bullied in the past?

“My friends defended me a lot.   I actually became friends with a guy who started making fun of me with “short jokes”.  His name is Kenny and we are friends now.”

What did you speak about at the school?

“I discussed anti-bullying, and just because you have something wrong with you doesn’t mean you can’t function like others.  I showed pictures of famous individuals that have psychological or cognitive disorders.  While I spoke about anti-bullying, I also raised awareness about MPS II.”

You made a video called “Courage to Make a Difference”.  Why did you use index cards instead of verbalizing your thoughts.

“I was inspired by Ben Breedlove, the 18 year old teenager who lost his life from complications with his genetic disorder , hypertrophic cardiomyopathy.  Ben had created a similar video.  And, I thought for five minutes and realized that speaking can be boring.  People who are listening will probably not finish watching, but reading would make a greater impact because people are curious and want to finish the story.”

Christopher – what are your ultimate goals? 

“My goals are to help people appreciate others, raise awareness about Hunter Syndrome and rare disease.  I would like to make an impact about openness and acceptance.  Let’s attack bullying before it happens let’s be proactive instead of reactive.”

 

 

 

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