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.


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.



I am sharing this story about two beautiful little girls that are fighting a rare disease.  If a disease is considered ‘rare’, research is probably going to be impossible to fund.  Who would want to do all of that work for just a few?  Also, these children, all children with a rare disease, will not have drugs specific to their illness because Big Pharma wouldn’t want to produce a drug that they would not be benefitting financially from.  These children are living painful, sometimes debilitating, and often shortened lives, and they and their families deserve as much care as any child.  Please read:



Here is another article about how young people with chronic illnesses are treated.  There is no understanding or respect.  This woman’s illness is not completely invisible.  I thing that I would notice if a twenty-three year old woman came into the ER with an oxygen tank connected to a tube that traveled up into two little prongs in her nose attempting to breathe to live a little longer.  How insensitive are we as a society that we can not understand that she may need help more than you at the moment?  I applaud this young lady for being strong and coming out to answer that woman, even if she didn’t have the strength in the beginning.