Today, Cooper is a strong healthy boy who loves to play baseball, create with Legos and Minecraft, and play piano. His energy is boundless and his curiosity is limitless. He loves music, dancing and making up silly words. From the outside, you would never know he was sick.

But when Cooper was just two and a half years old, he was diagnosed with pituitary stalk Langerhans Cell Histiocytosis (LCH). The diagnosis came a few months after his routine 30-month check-up when his pediatrician picked up on a passing reference that he had been peeing and drinking excess liquids in recent days. A battery of tests and a hospital stay resulted in a diagnosis of idiopathic central diabetes insipidus (DI). A few months later after further research and doctor’s visits an MRI lead us to an LCH diagnosis in the fall of 2016. We started treatment immediately in a bid to prevent any further complications from the cancerous growth.

Cooper bravely endured a year of chemotherapy, and today the LCH has no longer appears active. However, Cooper will always have DI. We hope this is the only permanent effect that Cooper has to deal with, but the threat of relapse and the loss of other pituitary hormones and/or neurodegeneration is a very real concern. Unfortunately, there is very little information on the neurological complications of LCH.

The two major obstacles to unlocking this mystery are that LCH is very rare and the study of late effects requires long-term patient follow-up. In the United States alone, only ~1200 new cases are reported each year (including adults). To overcome these obstacles, the LCH research community desperately needs resources to support long-term collaboration.

It is our hope that Cooper’s Pediatric LCH Research Fund can help:

Fuel the development and maintenance of durable investigator/patient networks that are required to study this small population over long periods of time

Support both translational and clinical research to discover and/or evaluate new treatments, diagnostics, or tools to prevent or treat the neurologic late effects of LCH

This research is critical to securing a healthy future for our boy and other children around the world like him. We hope you will join us in this important cause!