Help bring awareness and research for HLH

September is Histiocytosis Awareness Month. For those who don’t know, histiocytosis is defined as a group of rare disorders in which too many histiocytes (a type of white blood cell) build up in certain tissues and organs, including the skin, bones, spleen, liver, lungs, and lymph nodes. This can cause damage to tissue or tumors to form in one or more parts of the body. There are different types of histiocytosis, including Langerhans cell histiocytosis (LCH), hemophagocytic lymphohistiocytosis (HLH), and malignant histiocytic disorders. Histiocytosis occurs most often in children but can occur at any age.

Wes was one of the unlucky ones to be diagnosed with HLH. A disease no one should have to try and fight. HLH is a very rare and not well-understood disease, causing many patients like Wes to be misdiagnosed before an accurate diagnosis is made. By the time most patients are diagnosed, it is either too late, or they are faced with the fight of their lives. Most patients are children, with many of those ranging from newborn to 3 years of age. HLH comes in like a tidal wave, full force without much warning. By the time the disease is diagnosed, many patients are critically ill. Many patients spend months in hospital before they can go home, while others spend months going in and out of hospital for rounds of treatment and checkups. Families are separated, and many struggle financially so their loved ones can have a fighting chance.

No one should face this fight; no family should go through the ups and downs of this horrible disease. No one should be left without a child, sibling, spouse, parent or grandparent.

Wes had so many plans to help others who were going through what he went through. He always talked about how he would spread awareness and support other families when he came home. Just because Wes isn’t “home” doesn’t mean his wishes can’t be fulfilled.

Every day for the month of September, I will be running 5km to raise awareness for HLH and all other histiocytosis disorders. Every step I take will be a reminder of what Wes went through; each step will bring hope to others going through the same thing. Even though Wes isn’t here to help others, I still can. So, on behalf of Wes and the fight he faced, I will run every day, so others have a chance to come home!

All donations will be made to the Histiocytosis Association of Canada to help research and support histiocytosis families.

From the bottom of my heart, thank you for your support!

Tayler Gray