Living with Muscular Dystrophy

Our youngest son Ryan has Duchenne Muscular Dystrophy.  He was diagnosed in January 2000 at the age of 4.  We watched as he began to loose different bodily function.  Two weeks before his 8th birthday Ryan's body, tired, lost his ability to walk. He attended the same elementary school from kindergarten through the 5th grade.  All his school mates had known him the whole time and accepted each change he went through.  All his teachers at Graham Elementary in Washington State went to great pains to make sure his peers knew what was going on and explained each phase as it happened.  But as he grew weaker and was not as mobile, Ryan sat on the sidelines and watched his friends play as he spent time with his adult helper at school.  Slowly, all Ryan's interaction was with adults.  His mother & I, our friends, his older siblings, who at the time were older teens and young adults and their friends.  He had no friends his own age, other than those he saw at school each day.

Our struggle was to do things with Ryan to make him feel as normal as possible.  Although we tried by taking him everywhere with us, he still longed for friends his own age that he could play with.  He always has looked forward to going to MDA Summer Camp each year and is always quick to let his mother & I know that we can leave once we have him settled in his cabin.  The first year he looked at us and said, Mama & Daddy you can go home now Donna cried all the way home.

In the Spring of 2008 we were relocated to Cleveland, Ohio with my job.  We moved into a rural township community.  Shortly after we moved in we were in the front yard working in the flower beds when the neighbors from a couple of houses down came up to introduce themselves along with their 13 year old son Zach. 

Ryan & Zach became fast friends.  Today Ryan is 16 and Zach is 17.  They have spent countless hours playing video games, talking about girls, looking at car magazines, talking about girls, listening to music, talking about girls, and the list goes on.  Ryan once told me that Zach makes him feel normal.

Zach was and is a God send to our family.  He has been from the beginning not the least bit awkward around Ryan.  If Ryan's arm falls off the arm of his wheel chair, Zach puts it back in place, if his glasses slide down his nose, Zach pushes them back up.  When they are laughing and Ryan has tears running down his face, Zach goes and gets a tissue and wipes his face.

My wish for every family that lives with Muscular Dystrophy or other illnesses would be to have a Zach to befriend their son.  It has been a blessing for Donna & I to watch the boys friendship grow over the past 4 plus years.