WHAT WOULD YOU DO?

I came across this video that I want to share with all of you.  It is about a rare disease and how difficult it is to find funding for research on the disease, find medications that could help these children, much less figure out to care for these sweet children, that is if, and when, they finally get diagnosed.  I have mentioned before that it takes an average of eight years for a child to be correctly diagnosed.    Are you wondering why there is no funding for research, no pharmaceuticals that want to find helpful drugs for children with this disease.  The answer is, money.  Why should they spend all of that money to research, or find a great medicine (possibly a cure) on a rare disease that maybe a handful of children will be born with each year in the United States?

There is no amount of money that could take the place of one child.  Each child on this earth deserves a timely diagnosis, Doctors and scientists who want to research the disease and a Pharma who will find them some help.  Most rare diseases are ones that children are born with.  Our children are not second-rate, they are our future.  How dare anyone stamp a dollar sign on their foreheads?

Ok.  My rant is over.  Please watch it entirely.

http://wtnh.com/2015/06/10/celebs-rally-behind-social-media-campaign-for-little-girls-with-rare-brain-disorder/

If anyone is interested in what has been going on in terms of research, here is an article that my cousin sent me on this subject.

http://www.likecells.com/article/33/

8 thoughts on “WHAT WOULD YOU DO?

  1. “no amount of money that could take the place of one child” Yes.

    “Our children are not second-rate, they are our future” Yes.

    Why isn’t this self evident to the men and women who say they want to lead our nation and the World?

    Liked by 2 people

  2. Hello Patty! Oh my God! That video was heart-wrenching. I found myself pausing it half way because I was a mess of tears. I can’t imagine what it’s like to have a child and then find out they were born with a death sentence at the age of 12. It’s a horror story. Thank you for bringing this disease to light.

    Liked by 2 people

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