We are raising critical funds for histiocytic disorders in the hope of finding a cure for our son, Larry Patrick, and other amazing kids and adults living with these rare diseases.

We can't do it alone- we need YOUR help!

Larry Patrick was diagnosed with Langerhans Cell Histiocytosis (LCH) when he was just 3.5 months old.  LCH is a rare, cancer-like condition that happens when a person's body makes too many immature Langerhans cells.  These cells are a typle of immune cell known as histiocytes.  When these cells build up, they can form tumors or damage tissue, bone and organs.  LCH is very rare and impacts children more frequently, occurring in roughly 1 in every 200,000 children.

In March of 2023, after noticing a strange rash spreading over his body, Larry and I were lucky enough to find an incredible dermatologist who had seen other kids with LCH during her residency at the Cleveland Clinic.  Thanks to her good instincts and expertise, Larry's diagnosis was swift and enabled us to travel to Cincinnati Children's Hospital and Medical Center in Ohio, leaders in histiocytic disorders, to pursue ground breaking treatment using gene inhibitors.  

In Cincinnati, we discovered that in addition to his skin, Larry Patrick also likely had LCH involvement in his liver and lungs.  Many other kids with LCH go months and even years without a diagnosis due to the rarity of the disease and thus lack of awareness in the medical community.  This time spent undiagnosed can lead to serious and irreversible damage for some with LCH, especially when high-risk organs such as the liver are involved.  

Thanks to his dermatologist in Virginia and the amazing team at Cincinnati, Larry was spared these consequential effects of LCH.  Larry began treatment at 4.5 months old and his response was immediate with symptoms resolving in a matter of days.  Larry continues on his daily oral chemo to this day and we don't know when he may be able to go off treatment but we are grateful for the efficacy of the inhibitors and hopeful for a cure. 

As we come upon 1 year with LCH in our lives, we are determined to raise awareness for histiocytic disorders in the hopes of helping others find quick diagnoses and treatment.  We also want to uplift the Histiocytosis Association who provide tremendous support for other patients and their families who live with these devastating diseases every day.  Most importantly, we hope to do our part to search for more effective treatments, and ultimately, a cure.

This year, for our first time ever, we will join other rare families like ours in the beautiful Blue Ridge Mountains to Hike for Histio in Shenandoah National Park.  It seems only fitting that we return to those magical mountains that mean so much to us already to hike for Larry Patrick and the other incredible kids like him.

Please consider supporting our family, especially Larry Patrick, and the other incredible kids like him who endure so much at such a young age, all while smiling and growing.

We are grateful for YOU!

All smiles waiting to be seen by Dr. Bartlett at CCHMC
Waiting for results from a PET ScanA little fun at the Cincinnati ZooCelebrating Victory!  No Active Disease!