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IMPORTANT NOTE: I redesigned and relaunched Joy In This Journey at www.joyinthisjourney.com after our daughter Elli died. You will find posts from October 2008 to the present there. Please come over and read the new journey there.

Jul 14, 2008

One in 278


I find this statistic astounding for two reasons.

One is the incomprehensibly high number of children affected by this condition. It is, at this point, impossible to reverse the damage that results in CP. And even though the doctors try to comfort us parents with the fact that it isn't a progressive disease, that is really only a half-truth. The body was designed to be ambulatory -- to walk. When a person does not walk their entire life, their body develops differently. Their hip sockets fail to form correctly, resulting in hip dislocation and often in hip reconstruction surgery. Their bone density is low, resulting in fractures. Their spines curve, causing a ripple effect I have yet to find the end of. The dominos tipped over by CP continue to fall long into adulthood.

The other reason this statistic is so astounding to me is that no-one seems to be aware of it. It took an incredible amount of effort to get the Centers for Disease Control to even do the "prevalence study" required to generate this number! If that many children are so profoundly and permanently and visibly (it isn't like a person with CP looks normal!) affected by something, why aren't newpapers, television stations, and internet media screaming about it? Why isn't more money being invested in research to identify the causes, verify the efficacy of treatments, and discover cures?

It reminds me of a bumper sticker I saw once: "If you aren't outraged, you aren't paying attention."

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