Thursday, September 17, 2009

Let it be known for what it IS

After reading some posts on blogs of fellow IS families...I thought I ought to help do what I can to show how little people really know about Infantile Spasms. For starters they can't even pronounce it right, so how do we ever begin to educate people about this?

So where is this coming from? This evening on CBS there was a whole deal about the poor insurance companies, but in part of that were the people that the insurance companies drop...individuals and families that are not only under the stress of medical illnesses, but the added burden of financial stress because of insurance companies dropping them or denying them coverage.

Here is a link to the segment about insurance companies, just fast forward it to 2min 51sec, and you will see the story of a little girl named Sydney, and her father as he tells how they were dropped from insurance upon Sydney's diagnosis of Infantile Spasms. Problem is CBS refers to it as Infant Spasms...maybe not a big deal to the average person, but when your life and your child's life is flipped upside with a diagnosis as rare as IS, you would like it to be recognized appropriately.

With that said. I am borrowing the number from a friend's blog post for CBS. So please call the number (212) 975-4114 and kindly correct them....better yet, suggest they do a show educating people about Infantile Spasms.

If you need some inspiration, just look at this face. This was the last picture taken (just 5 days) before Kylie's was diagnosed. Sad thing is there are soooo many other faces and families out there that have been afflicted with this same diagnosis.

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