Strength in Determination

Editor’s note: We are proud to share, with the author’s permission, an essay by eighth grader Sam Ray of Willcox, Arizona, who was a winner this year of the annual, national essay contest, “Breaking Barriers: In Sports, In Life.” The contest was created by Scholastic and Major Baseball League in honor of Jackie Robinson, to inspire students by Robinson’s perseverance and to teach them how to use the same values he did to overcome hardships within their lives.

My name is Sam Ray. I am 13 years old, and I have facioscapulohumeral muscular dystrophy (FSHD).  It is a genetic disease that affects 870,000 people worldwide or about 1 in 8,700 people.  It is named after the muscles it affects the most—the face, the scapula, and the arms.

I was diagnosed when I was six years old.  I have infantile onset of FSHD, so I am severely affected. Most people don’t show signs until they are an adult. In fact, some people are so minimally affected, they don’t even know they have it. Unfortunately, that is not my case. My symptoms are far worse. I started out just not being able to smile, then I got leg braces, had two surgeries on my foot, and now I am in a wheelchair, unable to walk. I am also losing function in my arms and hands. However, I am determined to help find a cure and I will continue to explore treatment options and be an advocate for research.  I face this disease everyday with courage, determination, persistence, and teamwork.

When the doctors first told me that I would need braces on my legs, I didn’t want them.  I didn’t want to be different from everyone else and have something visible that told the world that I had this disease. Next, I had to have surgery on my left foot because the braces weren’t enough to correct all the issues. I was in a wheelchair for several weeks and then had to use a walker. I never gained back my previous strength, and now I cannot walk at all.

Being in a wheelchair sometimes makes me feel excluded.  Not all places are handicapped accessible and I hate watching my friends play sports, knowing I can’t join them. I participate as a manager and pride myself in helping my teammates and coaches as much as possible.  Jackie [Robinson] walked out on to the field every game knowing he was different, but it didn’t stop him. Nor will it stop me.

Jackie couldn’t change the color of his skin, and I can’t change the fact that my muscles continually get weaker. Things that I used to be able to do, like walk from my bedroom to the bathroom, easily go over to friend’s houses, ride the bus, or lift a full glass of milk to my mouth are impossible now.  It’s scary to think about what muscle function I might lose next.   I have to rely on others to help me.  I have to be part of a team.

My family, teachers, and friends are my Brooklyn Dodgers.  My classmates are always super helpful. They carry my backpack, get things for me, tolerate me occasionally running over their toes with my chair, and typing on my computer in class. Also, they help me raise money for the Muscular Dystrophy Association (MDA) and are members of “Team Sam” for the annual walk in Tucson, AZ.  With their help, we raise over $3,000 each year. This money is used for research and to send kids to the MDA summer camp—something I look forward to each year.  Last year was our seventh year raising money.  We usually stay in a hotel and swim, then go out to dinner at a fun place.  My life would be much harder without the help and support of my friends, family, and teachers.

This is a disease that nobody wants, and sometimes I get frustrated, but I am determined to help find a cure or treatment. Two years ago, I had a wish granted through the Make a Wish foundation to visit an exoskeleton company in San Francisco. Most kids use their wish to meet a famous person or go to Disneyland, but I wanted to do something to open the eyes of the engineers and technicians that are designing these robotics, so maybe, they could build an exoskeleton for people with muscular dystrophy.  I think I accomplished my mission, but so much more needs to be done.

The last three years I have concentrated my science fair projects on things that could help people with muscular dystrophy. Twice I tried to design my own exoskeleton for my arm. Neither of them helped a lot, but it raised awareness and my design definitely got better. Maybe someday I will get it right.

This year, I did an experiment using creatine monohydrate and its effects on people with FSHD.  I took 5mg of creatine monohydrate for three months and measured my muscles both before and after and compared my results. My results were inconclusive, but while I was on the creatine, my muscles didn’t get any smaller. I plan to share my findings with the people that can use this information to make a difference in mine and other’s lives.

Recently, my mom got me an appointment for this summer with a renowned doctor in the FSHD community at the University of Rochester.  The U of R is also the lead research facility for FSHD. I will be examined by the doctor and also meet with the head researcher and share my experience at the exoskeleton facility and talk about my findings with the creatine experiment. My hope is that they will take me seriously. I also hope that I will be picked for a clinical trial in the near future. I want to help find a cure.  My muscles may not be strong, but my determination is very strong.

Jackie wanted change right away and he was the person who was willing to put himself in the line of fire. I hope to be that same type of person for an FSHD cure or treatment. I know it won’t happen overnight.  It was years after Jackie broke the color barrier in baseball that the Civil Rights Act of 1964 was passed, but he was the one that helped open the door to change.

Every cause needs a hero.  Every cause needs someone with dogged determination. Jackie once said, “Life is not a spectator sport. If you are going to spend your whole life in the grandstand just watching what goes on, in my opinion you’re wasting your life.”