NEMO – 72 cases worldwide
From Simon’s Mom blog:
This is no way for a 3 year old active boy to live. It pains our hearts. Our docs are working with our Washington (NIH) and Philadelphia (NEMO) expert docs to see if there is something else or another drug that might do less harm and more good. It is such a hard place to be when your child is one of less than 100 kids who has this double component disease that they don’t know alot about and don’t know how all the drugs will affect the child short or long term.
More here
From JT’s Dad blog:
We’re not sure yet if it is bacterial or viral. If it is viral it will take him a lot longer than a child with a working immune system to kick it. Either way, Jacob is stable – not requiring oxygen- and for that we are thankful.
More here.