Part Three: Learning a little about Down syndrome

31 for 21 Challenge – Day Twenty-Two

There is currently quite a bit of information and misinformation swirling around about Down syndrome these days.  So I thought I would try to clarify a few things, while also sharing some exciting new information – the current research and findings related to Down syndrome.  You know, to capitalize on Down syndrome’s 15 minutes of fame this month…

First, a few interesting facts that I haven’t highlighted yet, but wanted to share…

  • Forty percent of children with Down syndrome have congenital heart defects. They also have a higher incidence of respiratory, vision and hearing problems and are at increased risk of Alzheimer’s disease, childhood leukemia and thyroid conditions.  (Charlie wasn’t born with any heart defects and doesn’t suffer from any respiratory, vision or hearing problems.)  The other health issues (thyroid, and Alzheimer’s,) tend to occur later in life.
  • The life expectancy of people with Down syndrome has increased from 25 years in 1983 to 55 years, thanks largely to medical and technological advances, particularly in the ability to repair congenital heart defects.
  • All people with Down syndrome have intellectual disabilities and developmental delays, but the range of disability can vary from mild to severe.  We often get questions and comments about this as it concerns Charlie.  Many who interact with him, often comment that he must be in the more ‘mild’ range.  While this is what I want to believe with all my heart, I also have to acknowledge that we just don’t know – yes he is doing so well – he is responsive, interactive, etc.  But truthfully, only time will tell.
  • The incidence of birth of children with Down syndrome increases with a mother’s age. But because of the higher fertility rate of younger women and previous guidelines that younger women did not need screening, 88 percent of children born with Down syndrome are born to women under 35. I had just turned 28 when I had Charlie.

The research….

Did you know that there is an entire research center at Stanford University dedicated to Down syndrome?  The research center is lead up by “a group of scientists and doctors who do research to understand and improve cognitive abilities in people with Down syndrome. Who’s goal is to help people with Down syndrome by finding ways to enhance their ability to learn and remember.”

They have made impressive strides with their research on their chosen area of focus – cognitive ability.  Why only cognitive ability?  Because other common health issues (heart, kidney, etc.) that are common with those who have Down syndrome are treatable with today’s modern medicine.

That coupled with today’s emphasis on early childhood intervention (physical and speech therapies) those who have Down syndrome are now living longer (average age is 55) and more independently than ever.

And in September of this year, at the University of Colorado Denver, a new Global Research Institute was established with the goal to eradicate the ill effects associated with Down syndrome.

From the press release:

Anna and John J. Sie Foundation Commits $34 Million to establish Colorado as the Worldwide Beacon for Research and Care

Aurora, Colo. (Sept. 22, 2008) – Anna and John J. Sie have high hopes for their granddaughter Sophia, born five years ago with Down syndrome. Today, through the largest private contribution dedicated to people with Down syndrome, the family is determined to significantly enhance the lives of all people with Down syndrome. The new Linda Crnic Institute for Down Syndrome unveiled at the University of Colorado Denver’s Anschutz Medical Campus will have the single research focus of eradicating the ill effects associated with Down syndrome and will be the first to comprehensively address basic research, clinical research and clinical care all under one umbrella.



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