Living It Down

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.