A great explanation of telling your kids about their friend that

has Duchenne.

Going to School with Duchenne Muscular Dystrophy

                     By Lisa Littleton

Hey readers!  Our names are Andrew and Reece and we are two brothers living with Duchenne Muscular Dystrophy.    Andrew is nine and loves to play video games.  Reece is seven and enjoys building with Legos.  We are kids just like you but we are also boys living with Duchenne Muscular Dystrophy.  Duchenne affects mainly boys.  Having Duchenne means our muscles do not make dystrophin like most people’s bodies make to keep muscles working as they should.  Since our muscles work differently than other kids, we move slower than other boys our age.

Everyone has muscles but not everyone gets Duchenne.

You might be wondering how I got Duchenne.  Well, it is not something you catch from germs like a cold.  It is just something you are born with, like needing to wear glasses.  I did not do anything wrong and it is nobody’s fault.   Since Duchenne does not come from germs, there is no way for my friends to get it from me.

I cannot give you Duchenne Muscular Dystrophy.

Duchenne means my body does not make the dystrophin my muscles need.  Dystrophin is one of our muscle proteins that keep muscles strong.   The best thing I can do to help my muscles is to do an exercise program of daily stretches to keep fit.  These stretches are very important because they keep my muscles from getting tight.  When muscles are tight, they do not move as well, and it makes it harder to walk, run, climb, and play.  The stretches do not hurt too much and I can even do some by myself.

Doing stretches is just part of my routine like eating lunch or brushing my teeth.

Because I have Duchenne, I take medicine to keep my bones strong.  Sometimes when you take medicine you get something called side effects.  Just like you might take medicine for a cold, and even though it makes you feel better, it also makes you sleepy.  One side effect of my medicine is gaining extra weight even though I am not eating too much food or food with a lot of sugar and fat in it.

You will notice me eating healthy foods for snack and lunch.

Another side effect of my medicine is that I do not grow as much as other children our age.  Boys with Duchenne move their muscles better when they are short.  I do not like this side effect at all so you can really help me by not teasing me about my height.

Boys with Duchenne are shorter than other boys their age.

My medicine can also cause me to feel angry and grumpy sometimes.  So I may act differently than I normally do sometimes.  When I act this way I just need to take a rest for a little while.  Then I get back to being myself.

Sometimes I need to take a break to feel better.

When you have Duchenne you get tired easily.  You cannot move as fast as other boys.  It feels like having two five pound bags of sugar on your legs each day when you are like me.

Sometimes I need to take a rest because my legs are tired.

I use rolling backpacks for school because this is better for my muscles.  I also avoid using stairs and jumping on trampolines.  These things are not good for my muscles.  That’s why my parents built us a house without many stairs.

I do not use stairs unless I have to and I do not jump on trampolines.

Sports are something I love to watch and play.  The best sport for my muscles is swimming so I try to get in the pool as much as I can.  My muscles do not get as tired in the pool.  I have to be careful because even though the right amount of exercise is good for my muscles, too much is bad for them.

Swimming is the best exercise for my muscles.

Like most kids, I like to play outside at recess and take part in PE class.  I cannot run as fast as most kids but I can walk until I get tired.  Sometimes I need to play games like tag differently.  Tag is more fun for me if everyone walks instead of runs.

Duchenne Muscular Dystrophy does not stop me from doing most anything other kids do.   You may see an adult, like an aide or a physical therapist, join me in PE class to help my muscles stay strong and learn how to play games in a way that is safe for me.   I may do something a little differently than you in PE because of my muscles and there may be things I’m not able to do but I still like to feel included.

My condition causes me to break my bones more easily than you do.    One time, Andrew got tackled by accident and broke his elbow.  The neighbor felt really bad and apologized.  His Mom felt bad too and also called to apologize.  It really was an accident so we are all still friends.  We just have to be more careful than you might need to be when we play.

Now our Mom says we can’t play tackle football anymore.  But we do like flag football!

I hope that someday there will be a cure for Duchenne.  A cure is when doctors are able to end Duchenne from happening to boys.  Right now, many important people called researchers are working hard to find a cure each day.  Until then, my family and friends continue to raise money for the research that will find the cure.  Please do not treat me differently because I have Duchenne Muscular Dystrophy.  I am a kid just like you except that my muscles work differently than yours.

I am just a boy with Duchenne but a lot like you in every other way.

Kid’s Quiz on Duchenne Muscular Dystrophy

1.    What is dystrophin?

2.   What part of my body works differently than yours?

3.   What is a side effect?

4.   Can we catch Duchenne from others?

5.   Since my muscles work differently than yours, what do I have to do each day?

6.    Do stretches hurt?

7.   What type of food should all people eat?

8.   What are some things I should not do?

9.   What is the best type of exercise for boys with Duchenne MD?

10.   What is the best way for me to play tag?

Answers to Kid’s Quiz

1.    Something our bodies make to keep muscles working as they are supposed to.  Boys with Duchenne have bodies that do not produce dystrophin.

2.   Our muscles

3.   Side effects are other things that happen to your body because of having to take medicine.

4.   No

5.   Stretches

6.   No

7.   Healthy Foods

8.   Stairs and trampolines

9.   Swimming

10.    It is better for us to play tag by walking instead of running.