I was six years old when I was diagnosed with a rare disease; Langerhans Cell Histiocytosis (LCH). You would think that at such a young age I wouldn’t remember much, but I remember it all very vividly. I remember all the hospital visits, the ambiguity, the pain. I remember what it felt like for my parents as they navigated my new reality with little information and preparation.
Oddly enough, my mom unknowingly read an article prior to my diagnosis about histiocytic disorders, so when we finally got the diagnosis, she had already heard of it. We were fortunate to live close to a university hospital and to be taken care of by the heroes on my medical team who connected and directed us to people, organizations and resources who could help us in our journey.
One of those people and organizations was Jeff Toughill, founder of the Histiocytosis Association. Jeff and the organization welcomed us with open arms and were ready to help us conquer life with a rare disease. He knew first-hand the challenges we were experiencing as his daughter was also diagnosed with LCH and he made it his mission to help patients and families by providing a safe space, listening ear, education, community and help in finding the right medical team.
After 35 strong years, Jeff announced his retirement. I decided that since I had been involved with the association since I was seven years old, helping to launch a Pen Pal club to connect patients and families worldwide, volunteering for various events and fundraisers and most recently serving on the Board of Trustees as Secretary, I knew I had what it takes and decided to apply for the Executive Director position. Although Jeff is retired now, he still serves as my inspiration – another moment of realizing that life brought me to that exact moment for a reason.
I felt ready, I felt honored, I felt hopeful that I would continue to build off the tremendous efforts that Jeff graciously passed down to me.