Sunday, July 14, 2024

President Obama, Please Meet Addi and Cassi To Understand Why Your Jay Leno Joke Is No Laughing Matter

March 21, 2009 by  
Filed under Opinion, Rare Disease

Mediports Addi and Cassi Cyclodextrin Infusions

President Obama’s Special Olympics joke on Jay Leno may not seem like a big deal to some Americans but for others the gaffe is disappointing. Our twins, Addi and Cassi, are afflicted with a rare and fatal cholesterol disease called Niemann Pick Type C and they are considered “special needs.” We have all made mistakes with words or put our foot in our mouth from time to time. President Obama is human too and must be forgiven by the special needs community for his off hand joke. Of all people, our President understands what it’s like to live in a society where stereotypes abound and hopefully he will turn this negative situation into a positive.

What’s frustrating to me is that all special needs children seem to get lumped into one category — “retarded” (a word that should be forever removed from our vocabulary). Children with Ataxia-Telangiectasia are born healthy but completely lose their entire motor coordination control center in the cerebellum.  Their minds remain intact but they progress to wheelchairs and often die in their teens. Someone on the street would think a child with A-T is intellectually challenged when they are not. Many children who fit into the special needs category have life threatening and debilitating diseases like Addi and Cassi – they are called Rare Diseases.

Millions of people, primarily children, are afflicted with Rare Diseases that are often genetic in origin. President Obama needs to educate himself quickly and learn what it truly means to be special in America.  He will then learn to laugh with us and not at us. More importantly, President Obama can not only help us overcome stereotypes but he can invest in much needed medical research that can keep our special kids alive.


6 Responses to “President Obama, Please Meet Addi and Cassi To Understand Why Your Jay Leno Joke Is No Laughing Matter”
  1. I’m impressed, I must say. Seldom do I come across a blog that’s both educative and interesting, and without a doubt, you have hit the nail on the head. The problem is an issue that not enough folks are speaking intelligently about. Now i’m very happy I stumbled across this during my hunt for something regarding this.

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