My name is Liam River Smith at four weeks old I developed a high fever and was taken to the hospital. In less than 24 hours I was on full life support. The doctors didn’t think I would make it. October 10th, 2010 I was diagnosed with a rare blood disorder called HLH, also known as Hemophagocytic Lymphohistiocytosis.
This disease can be fatal if not caught early.

Liam in PICU – 10/19/2010

This is his story…. (October 8th, 2011) At four weeks of age Liam got a cold. He began to run a high fever and was taken to the doctor, and then to the ER. Seeing that his liver function was elevated, he was sent to Emanuel Children’s Hospital in Portland, OR. While the doctors worked on a diagnosis, Liam’s fever would not break, and his organs began to fail. It was then, at four weeks old that Liam was placed on life support and kidney dialysis.

Liam has spent most of his very young life isolated in hospitals, on chemotherapy, and taking steroids. He has a very rare disorder called hemophagocytic lymphohistiocytosis, or HLH. This disorder occurs when the body has too many of a particular cell, called a histiocyte, as well as too many of another cell, called a lymphocyte. Both of these cells are so-called white blood cells, responsible for fighting off foreign bodies and infection. However, when there is an over abundance of them, they can begin to invade good tissue and damage organs such as the liver, spleen, bone marrow, or skin. HLH is life threatening, but unfortunately, given the rarity of the disease there is relatively little information available on it. In fact, it’s called an orphan disease because it’s so rare it attracts little attention and receives no federal funding for research.

While the disorder is not cancer, it is treated in a similar manner, and so Liam has been in one form of cancer treatment or another since he was a month old. His initial round of chemo therapy lasted for seven weeks, at which point the HLH went into remission. However it reappeared three weeks later. After being hospitalized again, Liam restarted the treatment course to put the HLH back into remission.

I hope my story will help bring awareness to this disorder. There is no Government Funding available for research to help find a cure. It is all done by private Funding.

Please help by sharing this story with others so we all maybe
better informed and possibly save someone’s life.

Update April 19, 2011 - Liam left for Seattle to start the process for his lifesaving Bone Marrow Transplant, that he will recieve on May 12, 2011. Liam’s older brother Hunter will be bone marrow donor. It will be a long journey one day at a time. The first year post transplant is very critical. Please Keep Liam and his family in your prayers.

Liam’s Facebook Group
Liam’s Journey – HLH Warrior

Liam’s Blog:

 To view Liam’s Journey video/slideshow By: Nate & Heidi Kellar
click on the Youtube link:

Started March 1, 2011

Last Up Date September 7, 2011