Fewer people with Down syndrome in the US

My reponse to an article written by a fellow parent on the number of people in the US that have Down syndrome(DS). In my lifetime, I would like to find a way to understand DS and learn from it; and I hope to give my sons a better life, while I’m here on earth and long after I have left it should I leave before they do. Thanks for reading and for caring . . .

Dear Mr. Leach,

I hope you don’t mind if I call you Mark; the number of people living in the US ‘endowed’ with Down syndrome is inconsequential, and the fact that the number is tracked by the Centers for Disease Control makes it more so.

Fact(s):

• There are children born every year that are ‘endowed’ with Down syndrome (DS).
• There are children that die every year whether or not they are born with or without DS.
• The number of children aborted due to the possibility of being born with DS is a question that only the parents of these children can answer, and one that they will only answer when they face their creator, and not recorded by the way.
• Your numbers make sense, but what question are you attempting to answer?
• How many children are aborted that have been misdiagnosed?
• My wife and I are ‘pro-choice’ and given that we did not know prior to their birth, we are forever grateful that we never had to face the choice, to live or not because life without Kyle and Hunter would be a life less lived.
• What about the number of children born with co-occurring DS and Autism? And if given a choice based on a test how many children are out there that have simply been “labeled” DS or multiple disability.
• How many children are unknown to the Centers for Disease Control because the parents refused to have their child listed as a disease?

John Langdon Down simply described the condition and through the years many have attempted to eliminate it or ignore it . . . But these children, no matter the number exist and they exist for a reason.

As parents of children ‘endowed’ with DS, we look not for any way to take away the condition . . . but to better understand ‘it’ and learn from ‘them’.

Albert Einstein put it best “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

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About kellykrei

Husband to Michele Martinson Krei for 32 years and father of 21 year old twin boys, Kyle & Hunter, both endowed with Down syndrome and Autism Spectrum Disorder.
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2 Responses to Fewer people with Down syndrome in the US

  1. Kelly–thanks for your comment on my blog post. Your quote from Einstein reflects a recent tweet of mine of a blog post arguing that perhaps people with Down syndrome and other conditions are labeled intellectually disabled because the wrong tool (IQ test) is being used to result in the wrong measurement. Similarly, your desire to understand Down syndrome is a sentiment I shared in my post on “before we fix Down syndrome, shouldn’t we understand it better.”

    My intent with the post on the 150,000 fewer lives than estimated was to pass along new information that is more accurate than the traditionally-stated statistic of 400,000 individuals with Down syndrome living in the United States. That said, the post, and the article it is based on says that both the 400,000 and the 250,000 figure are estimates based on available data.

    Many of your questions point to the unknowns that persist about Down syndrome. Poor records are kept, there are misdiagnoses, and yet decisions continue to be made about the administration of prenatal testing based on estimates and inaccurate data.

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    • kellykrei says:

      Mark,

      Thank you for what you do; if we as parents do not create awareness for our children, then we become the fish. I really like how you describe your daughter as being “endowed” with Down syndrome, I hope you don’t mind if I steal that from you. Thanks again, blessings to you and your family !!

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