Sunday, December 7, 2008

Researching Krabbes

I have spent the past few days researching Krabbes Disease on the Internet.  There is little statistical data out there that I could find.  There is a higher prevalence in certain countries. But as far as U.S. data, it just isn't found.  

There are many questions that I have, such as:

I want to know prevalence in the U.S.  Reasons why it isn't screened for in most states.  How many children are currently fighting Krabbes?  What are the reasons that Krabbes isn't currently screened?  I hope and pray the answer isn't because it is such a rare disease or that it is related to cost.  To little Greyson and his family, it isn't rare.  It is a horrible reality.  

I did find that Illinois will soon join New York as a state where Krabbes is a newborn screening. How many other states are in this process?  What is the protocol for contacting lawmakers?  I did find information on a bill, the Newborn Screening Saves Lives Act of 2007.  It is suppose to be on the President's desk for a signature in the near future.  From what I found..... it has been put on hold.... why?  Why the heck isn't a 2007 bill a law by 2009?  My hope, is that it will be.

In her most recent post titled Seth, Nicole talks about Seth having PKU.  He had a question..... why is it that his condition was more important than his brothers.....  I would love to have him ask that question to lawmakers.  I want those in charge of passing these laws to answer him directly.  Not another parent should go through this.  Would it be a different story if a powerful lawmaker was going through having a child with Krabbes?


Ken said...

I lost my first grandchild to Krabbe in 2002 & have spent much of my time since then in the Krabbe cause. I have been in touch with many families bith in the US & Canada, & here in the UK & Europe. I would like to try & answer some of your questions. Please may I direct you to
If you have not visited already. Please use the message board to contact me. I will be away from the PC until later this week but would really like to make contact.
Ken Roberts. (UK)

Carrie said...

As you know (since I found you from my blog), one of the tests they are doing on my daughter is for Krabbes disease.

I am also in Texas, and I would love to work with you on getting this (and other very important tests) done for the newborn screening process.


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