Margaret's guide to Down syndrome

Here's Margaret's essay, which she wrote laboriously and with assistance over a period of weeks. She did research, including interviewing her pediatrician. All the opinions expressed are hers, although she did need help figuring out how to get her ideas down on paper.

Margaret's essay came to the attention of the Washington Post health section, and was printed there in in 1999. It is available through the Post archives.

By Margaret Muller

Today I'd like to tell you about Down syndrome. My purpose for talking about this is to be able to say, "Yes, I have Down Syndrome. Sometimes I have to work harder to learn things, but in many ways I am just like everyone else." I would like to tell people that having Down syndrome does not keep me from doing the things I need to do or want to do. I just have to work harder.

Down syndrome is a condition and not a disease. You cannot catch Down syndrome like you can catch a cold or virus. It is something you are just born with--like blond hair and blue eyes. If you have Down syndrome when you are born, you will have it your whole life.

People without Down syndrome have 46 chromosomes, which carry all the genetic information about a person, in each of their cells. People with Down syndrome have one extra chromosome. So a person with Down syndrome has a total of 47 chromosomes in each cell. Doctors and experts are not really sure what causes it, but they say it occurs in about one of every 700 babies. This happens randomly, like flipping a coin or winning the lottery.

Everyone with Down syndrome is a totally unique person. The extra chromosome makes it harder for me to learn. Sometimes I need someone to say, "Settle down and get busy!" Also, it's really easy for me to be stubborn, so I don't mind if you say, "Hey, Margaret, please stop."

Even though I have one extra chromosome, the rest of my chromosomes carry information from generation to generation just like yours. Chromosomes control certain genetic characteristics, like eye color, skin color, height and some abilities like music, art or math.

For example, I get my blue eyes from my father, my fair skin and freckles from my mother, my blond hair from my grandmother, my long thin feet from both my mom and my dad, and my need to wear glasses from both my grandparents and my parents. I like to concentrate on the ways that I am like everyone else.

I am very lucky to be alive today rather than 50 years or even 20 years ago, because back then the doctors and experts believed that people with Down syndrome were not capable of learning. But now we know that people with Down syndrome are capable of doing many different things.

I personally am doing things that some people didn't think I could do. When I was born, somebody told my mom that it was too bad that I was named "Margaret" because I would never even be able to say my name. That person might never have expected that I could win four medals in Special Olympics swimming, be a green belt in karate, cook a pizza, read a novel, run half a mile or get up in front of the class and give a speech! With a lot of hard work and encouragement, I have been able to do all these things.

I am not sad about the fact that I have Down syndrome. It is just part of me. I have a great brother (most of the time), and parents who love me a lot. I have wonderful friends who enjoy hanging out and having fun with me. I have teachers who help me keep on learning new things. I am glad to be a student at Lincoln Middle School, because it is a great school and almost everyone is really nice. Down syndrome has not stopped me from having a worthwhile life.