We are on a plane to Houston, Texas.  We are on our way to meet with the research scientists and doctors who are working on the sequencing project for our family.  Dr. Lupski will meet us at the Texas Children’s hospital tomorrow morning at 9 am.  He wants to meet Noah and Alexis, go through their history, look at tests, function, etc.  Life Technologies, Joe’s company, is sending out a film crew to shoot the visit, interview us, the doctors and scientists, and film all of the Life Technology equipment that is being utilized to change the future of medicine.  Life Technologies’ vision is to have the technology in place to be able to diagnose children with rare disease, certain gene mutations, at the beginning of their medical journey.   This is significant for the future of our health care, our children, our families.  As we sit on this plane, Joe and I discuss the extreme cost involved in going to all the specialists, having a multitude of testing done, invasive testing, putting the kids under anesthesia over and over again.  The cost for Noah and Alexis’s health care over their life time has definitely reached in the 100’s of thousands, probably close to a million for the two together.  What if the government were to actually fund healthcare in a way that would look at individualized health care?  What if our funding would increase to better analyze our genome?  What if that would lead to a better understanding of disease and neurologic disorders?  There is more that doctors don’t know about the brain than they do know.  Children’s rare disease, all put together, is effecting millions of people in our country alone.  What if funding went to sequence these children to understand what their genome looks like and then use that data to help other children that have the same genetic mutations?  The rise in health care costs, the unlimited amount of testing that is being done on the kids with rare disease to find answers, the unknowns that we are coming up against, need to be known.  A change needs to take place in our medical industry, in our government, in our health care.  Doctors need to share findings, cases they are working on and discoveries that are being made.  Patients need to keep getting stronger in their advocacy for reform.