Across the globe, 300 million people face the impact and inequities of living with a rare disease. Neurofibromatosis, Ehlers-Danlos syndrome, Niemann-Pick disease type C, muscular dystrophy, and so many others of which billions of people are unaware. For those who are diagnosed, these diseases can create feelings of isolation from the world around them.
It doesn’t have to be that way.
Rare Disease Day is a patient-led global movement created in 2008 to raise awareness and support for the millions who have one of over 7,000 rare diseases. Its initiatives have helped to improve access to healthcare, proper diagnoses and treatment, as well as community advocacy work. It is a much-needed movement rooted in belonging, inclusion, and equity in communities throughout the world. Double H Ranch is proud to support this life-changing initiative.
Each year, Double H serves hundreds of campers with rare disease diagnoses, striving to ensure they feel a sense of belonging, and celebrating them as individuals. To recognize this year’s Rare Disease Day, we reached out to two members of the Double H family; former camper and counselor, Patrick James Lynch, and current camper, Kerrin McCarthy. Both Patrick and Kerrin offered their honest feelings about living with a rare disease and how Double H has affected that perspective.
Born with severe hemophilia A, Patrick James Lynch faced a challenging childhood that most cannot imagine. Having developed an inhibitor in childhood, Patrick experienced numerous internal bleeding episodes while growing up. As a result, Patrick missed a significant amount of school, along with opportunities for consistent friendships and participation in sports. He also suffered the death of his brother Adam and other loved ones from hemophilia, deepening the disease’s reach and pain.
Patrick attended Double H as a camper from 1995-2003, a counselor in 2004 and 2005, a unit leader in 2009, and a volunteer from 2006-2008 and 2010-2014. All of these experiences were important to him, especially the effect of the counselors’ excitement and enthusiasm. “I felt so loved, so special, and so worthy for those five-and-a-half days. They were the most important days every year.”
Patrick’s Double H experience impacted him in more ways than one. From recognizing that everyone has challenges to seeing that life can include extraordinary moments, camp taught Patrick to push himself beyond his comfort zone. “Camp taught me that most things in life, with the right amount of willingness and imagination, can be adapted for people of any ability level.”
His Double H experiences as a camper, and then later as a counselor and volunteer, inspired Patrick to start Believe Limited, an award-winning digital content agency in Silver Lake, CA. “Living with a chronic condition as disruptive and painful as hemophilia is very difficult, which is why I started Believe Limited—to use film, video, and all forms of entertainment as tools of engagement, education, and empowerment; to increase understanding, decrease loneliness, and to help patients and families arrive at better outcomes.”
“Camp, and the beautiful organized chaos that is faciltated by the most outstanding, committed young people, can impact that sense of self—forever. That is such power. Camp is power.” —Patrick James Lynch, former camper, counselor and volunteer
Kerrin McCarthy lives with the hereditary illness of sickle cell anemia. The 16-year-old from Brooklyn, NY has been a Double H camper for nearly a decade. “Since I was seven years old, I have traveled on that four-hour bus commute to Lake Luzerne. I always look forward to the cheers of fellow campers on the bus as we get closer and closer.”
For Kerrin, Double H has offered new experiences like fishing, zip lining, snowboarding, and archery; it’s also provided friendships. “My favorite part of camp is forming bonds with people I can relate to who share similar experiences with different backgrounds. Camp unites us all.”
The Double H experience has led Kerrin to learn about herself. “Camp allowed me to be my true self and embrace my personality. I used to be shy and much more introverted, but now I am very outgoing.” Her mother Donna agrees, “I have noticed that Kerrin is more assertive since she attended camp. Kerrin has a bigger, more confident spirit because at camp there is an environment of being inclusive.” She adds, “I am extremely grateful that Double H exists.”
And we are grateful that amazing people like Patrick and Kerrin welcome Double H into their lives. Please join us in celebrating all of our campers on this Rare Disease Day. With your awareness and support, we can continue to further this important movement by providing an environment of inclusivity and equity for all—because there is nothing rare about the need to be loved and respected.
You can learn more about Believe Limited’s programs and services here, including Hemophilia: The Musical!, a three-day musical theater and arts workshop for the bleeding disorders community.