Living It Down MAG

By Adam Schmitt, Cumberland, RI

Most likely you have seen someone with Down syndrome, but have you ever wondered what it is like to live with it?

Down syndrome, named for Dr. John Langdon Down, is caused by an abnormal number of chromosomes. Most people have 46, 23 from the mother and 23 from the father. A baby who is born with Down syndrome has one extra, which is due to an error called nondisjunction. It is still a mystery what causes this to happen.

It is not possible to “catch” Down syndrome; you can ­only be born with it. Any person can conceive a baby with the disorder. The chances are slightly higher if one or both of the parents have it. The chance of giving birth to a baby with Down syndrome increases with the age of the mother. At 35, the odds of a woman conceiving a baby with Down synrome are one in 214. At 45, the risk is 1 in 19.

People with Down syndrome are easily identifiable because of the physical ways the disorder affects them. They usually have a flatter faces, smaller ears, eyes that slant up, and a larger tongue. What you don’t see, however, is that while some are free of medical problems, many others have serious health issues. ­Almost half of people with Down syndrome develop heart problems and a disease that causes high blood pressure. Still more are born with vision and hearing problems. People with Down syndrome often have a lazy eye and need glasses. The disorder may cause obesity because people who have Down syndrome metabolize calories slower. About 10 percent develop seizure disorders. Also, a newborn baby with the condition has a 10 to 15 percent higher risk of developing leukemia. They also may have problems with their immune systems and have a 12 times higher death rate from diseases because their bodies can’t fight the bacteria.

Children with Down syndrome also develop more slowly. They may be late to sit, stand, or respond. This may be because children with the condition have dull muscle tone. Down syndrome can be a horrible disease if steps are not taken to prevent health issues.

Unfortunately there is no cure, but there are ways to treat some complications. Heart problems can be corrected with surgery, and drugs can help prevent diseases. Without ­proper treatment, many infants would die, but now lots of people with Down syndrome live to be 50 years and older and enjoy life.

One summer I volunteered for a baseball team for people with special needs. I was a buddy to a boy named Colby who was seven and had Down syndrome. I was a little nervous about working with him but soon I realized he was one of the happiest people I had ever met. Every time I saw Colby he gave me the biggest smile and came running over. In fact, he ran everywhere. Colby never seemed short on energy. It was that summer that I realized Down syndrome might not be as big a curse as most think.

Life is difficult for those with Down syndrome. Some are ridiculed because of their appearance. Some spend a lot of time in hospitals for treatments. However, many do lead normal lives with a job and even a family. Some, like Colby, are oblivious to the meanness of others and live life to the fullest. With our technology, we are getting closer and closer to finding a cure for this truly mysterious disease.



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This article has 8 comments.


HCReingold said...
on Aug. 28 2010 at 10:27 pm
HCReingold, Rochester, New York
0 articles 0 photos 10 comments
Down's Syndrome is just another aspect of humankind.

jewgirl BRONZE said...
on Oct. 27 2009 at 12:11 pm
jewgirl BRONZE, New Orleans, Louisiana
2 articles 0 photos 2 comments
Down Syndrome is not horrible nor is it a curse. It is not a disease, it is a genetic condition. People with Down Syndrome can be active members in a community if their function level is high enough and if they are given a chance to. They have the same desires and feelings that typical people do. They do not suffer, as you say but lead lives in the same fashion as typical people do. However, I agree with Sofiaforlife, that they do teach others about how valuable life is but not because of their weakend immune systems but, because many are optimistic people.

Sofiaforlife said...
on Jan. 20 2009 at 6:35 am
I think this article is insightful. To Nikki, mother to a child with Down's Syndrome, I understand your concern with the validity of the author's facts. However, I must say that I do not believe that the author intended to say that children with Down's Syndrome do not grow up to live ordinary lives like any other person, only that their lives can teach others about how valuable life is not only because there are actually a lot of increased health risks but also because every child that I have met with this syndrome is always so happy with the life that they are given (I have been volunteering with Special Olympics since I was around 12 and have been babysitting my neighbor's child, who was diagnosed with Down Syndrome while still inside his mother's womb, since he was about 2 months old). Also, I would like to point out that if you would like to refute an article, it is best to use proper grammar and use the correct version of the word by (not buy).

Nikki said...
on Jan. 1 2009 at 11:04 pm
I would love to educate you since you are a student and I am a mother of a child with Down syndrome that our children do not die today because of weakend immune systems, with todays medicine our children do fine, I would also like to let you know that our kids go to school, graduate with diploma's, go to college, get degree's, get jobs, pay taxes, date and get married, our children today, can live on thier own, and are very independent, and most of all you need to know that our children do not suffer. Their great people with great lives, and before you publish something like this, you should talk to parents and do your research much better.



Thanks, but you really need to know this. Oh and buy the way, the only cure is acceptance.

Juliette said...
on Jan. 1 2009 at 5:04 am
This is a great and informative article! I like the fact that you researched and that your facts show you have done your 'homework' and know your numbers. Good JOB!! Personal topics such as disabilities require more than facts and need a 'human touch". I would, as a parent of a child with Down syndrome, like to hear more about how you feel about people Down with syndrome, how you can be friends with someone with Down syndrome and how you can help your friend with Ds become all that they can be...like you should want to do for any other friend...

BTW, I love your statement that 'Down syndrome might not be as big a curse as one might think."

It's been a HUGE blessing in our family!!!



Keep up the good work! I think you have a great future!

Juliette

C Shepherd said...
on Dec. 31 2008 at 7:07 pm
Teen Ink needs a better editor. Kids, Down syndrome is NOT a "horrible disease." It is not a disease at all. It is called Trisomy 21 (meaning the person has 3 21st chromosomes) because it is a genetic condition. It can't be cured. People with DS do develop at a much slower rate, but the end result in adulthood varies significantly from people who are severely affected by heart, gastronomic, and other problems and who may be significantly developmentally impaired to the other end of the spectrum where the person has no medical issues and has a low, but normal, IQ. We don't know why the variance is so significant, but we think it is linked to the introduction of intense therapy in early childhood which focuses on keeping the child as close to "normal" developmentally as possible, and treating the various health issues that develop aggressively.



People with Down syndrome are NOT oblivious to the meanness of others. Like you, a person with DS knows when you're talking about him or her, knows when she's being condescended to, knows when she's being made fun of. It hurts them. When you say something mean to a person with DS, they can't give a quick retort--that requires a quickness of thinking that many of these people don't have. By the time they have formulated something to say to let you know that you have hurt them, you may be long gone. They know. Don't do it. It is painful and they don't deserve ridicule.



I have an 11 year old son with DS. He's on grade level in reading, one grade behind in math. He has friends who are "typical" and he has friends who are "special." If you have a chance to get to know someone with DS, take that opportunity. You will gain more from that experience than the person with DS will.

doihavtasay said...
on Dec. 31 2008 at 2:58 pm
You are a very insightful young man! Thank you for this wonderful article. Spending time with people who have DS is the best cure we have right now.

( though help is on the way, check out DSTRF ) Most of their hardships stem from the prejudice of others, not from the DS. There is a wonderful organization called GiGi's Playhouse that gives people the opportunity to work and play with those who have DS- check it out at GiGisplayhouse.org

Rickismom said...
on Dec. 31 2008 at 6:01 am
Well researched article. I can only add that if you would talk to several teens with Down syndrome, you would see that they have mostly the same desires and hopes of all of us. Anyone who wants to see what life is like for a teen with Down syndrome is welcome to visit my blog. Ricki is 14.

http://beneaththewings.blogspot.com/


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