I was reading a rather disturbing story on CNN this morning about a German doctor who moved to Australia with his family in order to provide services in an area with a drastic shortage of medical personnel. His application for permanent residency has just been denied due to the government's decision that his young son will cause undue cost and care because of his Down Syndrome. Fingers crossed that this great family will be allowed residency. They have the backing of the Prime Minister so it looks hopeful.
Outrage has sparked a heated debate about the Australian governments view of the condition, as well as the health status of those looking for residency in the country. It may cause an uproar with their immigration departments and new laws may be seen on the books shortly.
The story made me look into Down Syndrome a little more. I know a few people who have kids with Down Syndrome and it's a condition that requires a lot of care. Some kids do well with therapy, others require tremendous health services, including heart surgery, as about half of the babies born with Down Syndrome have heart conditions - some pretty severe. Others with the condition lead fairly normal lives, and can graduate high school and even attend college. Like any condition, Down Syndrome affects people differently and the ranges can be quite vast.
What is Down Syndrome?
Most (more than 95%) have an extra chromosome (chromosome 21) and the other 4% have a bit of an extra chromosome. Down Syndrome is sometimes a genetic condition, handed down by genes of the father or mother but it is mostly non-genetic. It is caused by faulty cell division in the womb.
How is it diagnosed?
Often during pregnancy. A test called a triple test is used to determine evidence of Down Syndrome and this test is voluntary. Women over 35 are strongly advised to get this test. While most Down Syndrome babies are born to women under 35 (due to most women having their babies before that age) the risk is a lot higher for women over age 35 and certainly over age 40. However, no test for this condition during pregnancy is conclusive. These tests can be false positives.
After birth, a Karotype test is done to evaluate the baby's chromosome count and the baby herself is evaluated as people with Down Syndrome have facial and physical attributes that are common with this condition - a space between the big toe and the rest of the toes, a deep crease in the palm of the hand and facial feature like upturned eye lids and a flattened nose bridge, along with a smaller mouth and larger tongue than average.
Living with Down Syndrome is different for everyone. Many kids with Down Syndrome head to mainstream schools and attend regular classes or attend certain special education classes in mainstream schools. Many need physical and occupational therapy and often take speech therapy classes.
Adults with Down Syndrome can lead full lives and hold regular jobs and hobbies. Many live at home with older parents, or live in group homes where they can be assisted if needed, but also maintain a level of independence. Others are capable of living fully independently. They can participate in sports, community events and all aspects of life. Thankfully, the days of institutionalizing people with this condition are over.
For more information and support, click to the National Down Syndrome Society here: www.ndss.org
For phone support, call 1.800.221.4602. Help is available M-F from 9am-5pm (EST) in 150 languages.
Have you (or someone you know) been affected by Down Syndrome?
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