I had no idea that March 21 is World Down Syndrome Day. I don’t know anyone with Down syndrome. Although I have seen people with this condition I have only personally known one person, a guy I worked with at a grocery store. He was very funny and loved to tell jokes. He was always polite except when his mother would show up to buy groceries and try to engage him in conversation. He would always try to ignore her, clearly indicating she was intruding into his personal space and independence. I admired him. But, still, I know very little about the condition and how I would go about observing this day.
One way advocates say a person can observe the day is to take some time to read articles and stories about what it is like to live with Down syndrome. So, educating oneself and becoming more aware of what it is like for people with this condition is a great way to pay respect to this national day of observance.
Random acts of kindness are always a great way to observe any special holiday or event. Perhaps give gifts to loved ones or neighbors that are related to the condition, such as awareness T-shirts. There are many charitable organizations that could benefit from observance in this way by purchasing the gifts from their websites.
Spreading the word about World Down Syndrome Day is also a fantastic idea. Printing off informative postcards is easy and doesn’t cost a lot of money. Then, throughout your day, scatter them around town, leaving them in noticeable places.
A person can step it up a notch and make a donation or long-term pledge to a non-profit dedicated to the support and research within the Down syndrome community. Pledges and donations go toward all kinds of wonderful things such as scholarship funds for people living with Down syndrome. Some organizations to consider:
• Lettercase – Publishers of informative bi-lingual books about the condition
• National Down Syndrome Adoption Network – Often babies born with Down syndrome are given up for adoption. This agency provides critical specialized support for the babies and adoptive families.
• Down Syndrome Research Center of Stanford University.
Here are some basics to understanding what Down syndrome is:
Extra Pair of Chromosomes – Every human cell contains a nucleus storing genetic data. Genes determine all characteristics of a person: hair color, eye color, etc. The codes for characteristics are grouped as chromosomes. Each nucleus contains 23 pairs of chromosomes, 23 from each parent. If a nucleus develops an extra pair of chromosome 21, the result is Down syndrome.
Distinctions – The genetic characteristics of the extra chromosome result in particular physical distinctions: smaller stature, less muscle tone, eyes slant upward and a singular crease across the palms. All persons with Down syndrome will exhibit some, or all, of these physical characteristics.
Of all American babies born, on average, about one in 700 will be born with Down syndrome. It is the most common genetic difference condition in the United States. Although historic illustrations and photographs record that this condition has been around for centuries, it was not officially recognized by the medical community until 1866. A French doctor, Jerome Lejeune, later determined the chromosomal origins of the condition in 1959. In the year 2000 the determination that the genetic difference lay with chromosome 21 was discovered. Research was vigorously renewed with this new information.
Down syndrome is recognized as presenting in three types: trisomy 21, mosaicism, and translocation. The recent discovery of the chromosome 21 link has led to the understanding that the three different types are caused by three different types of cell division error. Research leans toward the condition being hereditary rather than caused by environmental factors.
Prenatal tests cannot diagnose the condition in a fetus but can provide the probability factors for the chances of the baby developing the condition. But parents won’t know definitively until after the baby is born. Babies born with the condition can look forward to a life where they are integrated into their community. People with Down syndrome can go to school, have a job and engage in just about any activity they want to. Although cognitive delays and learning differences are present, these can vary in degree from mild to moderate. A person with Down syndrome has the potential to have a very long, independent life filled with achievement.