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Margaret’s guide to Down syndrome

May 12th, 2007

Here’s an essay by my daughter Margaret, which she did for a middle school writing assignment. It was not an easy task for her, and she went through many drafts. She did research, including interviewing her pediatrician. All the opinions expressed are hers.

Margaret’s essay came to the attention of the Washington Post health section, and was printed there in September, 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!”

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.

10 Responses to “Margaret’s guide to Down syndrome”

  1. Jo Ann Simons Says:

    I just read your essay and it is wonderful and I am so glad we know you.

  2. Jawanda Mast Says:

    Margaret, I have known your mom for a few years and I too think she is awesome. I love your essay. My daughter Rachel has Down syndrome. She is nine and has the best life of anyone I know. What I like best about your essay is that you are a role model for my daughter! We all need role models and I can use you as a role model for Rachel. I know your mom will share this with you and I look forward to meeting you someday! Thanks for sharing your thoughts with us!

  3. Deb Canney Says:

    Dear Margaret,
    Thank you for writting such a wonderful letter. My daughter Samantha who just turned six, also has Down Syndrome. You are an inspiration to me as a mother knowing that my daughter will have friends and find success. You give me hope. Keep up the great work and keep proving yourself to everyone.
    Sincerely,
    Deb Canney

  4. Gretchen Says:

    Thank you Margaret. I have a daughter named Margaret also. I love your name. Also, thank you for this wonderful essay. I am taking my sweet little boy who is 2 years old, named Ricky, and bringing him to a high school to teach the students about Down syndrome. He also has Down syndrome. I think I will bring your essay to read to them so they understand what it is. You did such a great job that I think I would be crazy not to just use your words!! Thanks so much!!

  5. Heidi Webber Says:

    Dear Margaret
    What a precious article – you are a star! I have a wonderful angel, Hayley, who is four years old, and it is just so lovely to read such an inspiring piece by a teenager with Down syndrome. Thank you for the hope that you give mothers like myself. Continue shining, my girl!
    Love Heidi – South Africa

  6. Cleo Says:

    Dear Margaret,

    I love your article. I see your beauty and light. I admire your honesty, strength, determination and wisdom. Thank you so much for sharing a little of your beautiful, loving and amazing life. I’m a PROUD FAN :)

    Many Blessings ~

  7. Paula Rosenblum Says:

    Margaret, I am so impressed by your essay and thank you for sharing with all of us your experience of having Down syndrome. I have a fourteen-year-old daughter who also has Down syndrome and she has just finished middle school. I am going to share your essay with her because I think she will enjoy reading about you because you have so much in common. Keep up the great work and keep your positive outlook on life!

  8. Jennifer Wrzyszczynski Says:

    Thank you for writing this piece! It’s terrific to read about your accomplishments.

  9. brinkall Says:

    Dear Margaret,
    Thank you very much for writing this essay (and thank you to this site for posting it)! I definitely learned a lot from reading it, and hopefully as more people understand what Down Syndrome is, they will understand that you and other people with Down Syndrome do indeed lead very ‘worthwhile lives’.

  10. Mary Muller Says:

    Thanks for including this on the website. I feel it is the heart and soul of this space. Having it here makes it easier to share with others – there are many people who need to read this essay.

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