The story of Marc
Copernicus was wrong: When it comes to the health of your child, the world revolves around them.
My daughter Audra was just 15 and only three days after competing in the state dance championships, I was in the emergency room of Children’s Hospital of Wisconsin with her.
After fighting off a week of high fevers she was diagnosed with the mono virus (Epstein-Barr virus), but it would be another 10 days before she was correctly diagnosed with HLH: Hemophagocytic Lymphohistiocytosis… A nasty blood cancer that would cause her blood cells to act abnormally and virtually destroyed her immune system.
Audrey was lucky. Damn lucky. HLH goes undiagnosed or misdiagnosed way too often, and if undiagnosed you are dead in eight weeks.
It is only because the doctors and nurses of Children’s Hospital of Wisconsin had the experience with HLH that Audra is alive today.
But it would take 58 days, most of it in the H.O.T. Unit, before she was able to beat this nasty disease. She was given a 20% chance of survival.
Audra was scheduled for a bone marrow transplant but thanks to the expertise of the doctors they were able to stop the HLH before we had to make that decision.
My daughter is the strongest person I have ever known. She lives life to the fullest knowing that she almost lost it. That is why I’ve dedicated my time and efforts to raising awareness and money so that no the parent has to go through hearing that they may lose their child to HLH.
If you want to learn more, go to www.histio.org.
If you want to help raise money for research, we are running again in 2016 in NYC at the Liam’s Lighthouse 5K for Histio (we raised $100,000 in 2015 for research). See Audra’s team page at:
http://www.firstgiving.com/fundraiser/TeamAudra/5KtoFightHistio2016