How Nick has beaten the odds against Myotonic Muscular Dystrophy

In February, we wrote about the power of golf.  Golf can be a life-long sport, and for people with disabilities, it can be more than a sport.  For Nick, a participant in The First Tee of Lake Erie at Crosswinds Golf Club with Myotonic Muscular Dystrophy (MMD), it means added confidence, life skills, sportsmanship, social skills, and more.  To learn more about Myotonic Muscular Dystrophy, click here via the Muscular Dystrophy Association (MDA).  His MMD diagnosis explained his developmental delays and learning problems (speech and language).

After starting to play with a plastic golf club when only a year old, and crawling after his golf balls, Nick learned to walk in order to get his golf balls quicker!  When he got a little older, he got a real golf club with a molded grip as a teaching tool and started to loose golf balls over the fence in the back yard.  When he got older, Nick joined up with The First Tee of Lake Erie where he benefitted from the golf coaching of PGA Instructor Dave Sanford.

Through The First Tee program at Crosswinds Golf Club, Nick has learned that the core values of the program translate to life.  Because he is skilled at golf, he is confident when playing or talking about golf with adults and other kids.  He also plays hockey and has played baseball, but he was never confident and was usually on the end of the bench and wasn’t very social.  But with golf, his confidence is through the roof.  The Rules of Golf have taught him respect, honesty and courtesy.  He knows about etiquette and it has translated to his life.  Nick’s teachers at school are enthusiastic about his behavior and love his thoughtfulness toward the staff and other students…even though he has been the victim of bullying on several occasions.  Lastly, sportsmanship.  In hockey, even though he plays goalie, he is the first to congratulate his former teammates when they score a goal…even if it is on him.  He never gets down and usually has a pep talk after the game when his team loses.  Nick knows that sports are really just a game.  Although Nick has some limitations due to MMD, he is hopeful to make the high-school golf team, and well on his way to that goal with 3 more years to practice in order to make that goal.

As MMD is a relatively new disease and there really isn’t much research yet, many questions about the disease go unanswered.  Nick’s family has started a charity golf outing to raise money for research and all proceeds benefit the local MDA and the national Myotonic Muscular Dystrophy Foundation.

About National Alliance for Accessible Golf
Dave Barton, PGA is the Executive Director for the National Alliance for Accessible Golf. The National Alliance for Accessible Golf is a coalition of recreational, therapeutic, and golf organizations committed to the inclusion of people with disabilities through the game of golf.

4 Responses to How Nick has beaten the odds against Myotonic Muscular Dystrophy

  1. Jon Gulch says:

    Great story! Thanks for taking the time to write about my wonderful son. Can’t wait for Spring to get back on the links with him.

  2. It was our pleasure, thanks for your help in assisting us on writing this piece!

  3. Non Gulch says:

    As mentioned in the story, we have the details for our golf outing. We would love for you to share, if possible:

  4. Jon Gulch says:

    Just wanted to post an update. Late late fall Nick participated in his first solo golf event. It was a Special Olympics individual event and he won the 9 hole tournament (by 25 strokes), while playing against much older competition. Then, just this week, he participated in a Toledo Junior Golf Association event. I believe that Nick is the first golfer with a disability to participate since the group started in 1973. He got off to a shaky start and was very nervous, but regrouped to par several holes. He ended the match with a 52 (9 holes) but had several winning moments. First, he parred his first hole in competition. Second, he had the low score on a hole within his group. And last, he finished the event. We figured it would be a struggle for him to finish 9 holes, keeping his and his partners score, while walking…and carrying his bag (first time he has done this)…but like always, Nick amazes me with his positive attitude and golfing skill.

    We are also well into the planning and coordination for our annual golf outing to benefit MDA. All informatoin is available at the following URL:

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