About Robby's Histiocytosis

Histiocytosis is a monster. It is a horrific disease that snatched my brother away from my family. It is a disease that roughly affects only one in a million people. For reasons I will never understand Robby was chosen by this disease.

It began as fatigue. On Friday, August 30, he went to the golf course as he did every day after school. He was able to golf a full nine holes (he was a great and dedicated golfer), but then was too tired to do eighteen. He decided to go home and rest. He soon developed a fever. My mom took him to the urgent care clinic and was told to get him fluids and plenty off rest. She did.

By Sunday he had a fever of 103 degrees. He was diagnosed with mono and sent home. We didn't know what it really was until it was too late.

We lost him that Sunday. It was September 8, 2013. He passed away at Children's Hospital in Dallas, TX. He lost consciousness before being airlifted there. We were forced to make the decision to unplug the machines that were by then keeping him alive. His liver and kidneys had all quit working and he was no longer breathing on his own. He was suffering from brain seizures and was presumed to be in a great deal of pain. We had no choice.

If the story of how we lost Robby seems brief, it's because it was. It happened in the blink of an eye. We had no idea what happened. Before losing Robby we had never heard of HLH or of any of its victims. If you would like to learn more about this disease, I strongly encourage you to. Early detection and diagnosis could help save lives. Please check out the official page here.

This is the last picture taken of Robby.
This was at the urgent care clinic.
He stayed strong for us.