By John Thorson – Longtime Camp Volunteer
Bleeding Disorders Alliance Illinois Camp Warren Jyrch (CWJ) is celebrating a golden anniversary! Fifty years of summer camp began in 1973 when at the time, the Illinois chapter went by the name of Hemophilia Foundation of Illinois. The camp was named to honor Warren C. Jyrch (1921-1971) of Chicago, the first person with hemophilia to undergo and survive open-heart surgery to replace a valve. The surgery was extremely risky with 2400 pints of blood used during the operation.
Through the years, there have been a lot of changes, but many things have remained constant. One area that has seen changes in the past 50 years is the variety of treatment options. Back then, patients spent a significant time in hospitals recovering from bleeding episodes and orthopedic issues. They missed a lot of school and opportunities to bond with other kids. For some young patients, their primary friendships were with hospital staff.
Today’s medical advancements and treatment options allow kids with a bleeding disorder to rarely miss school. Most often, they can participate in all sorts of physical activities like rock climbing, cycling, running, and sports such as baseball, basketball and volleyball, to name a few.
Fifty years ago, communication with affected families was through a tethered phone line or a stamped letter. It wasn’t always easy to make announcements about camp or request information from families. Even getting to camp involved maps and directions rather than an address easily plugged into a GPS. Today our ability to communicate is instant and helps to offer a more positive outlook on managing a bleeding disorder.
In those times, only boys were thought to have hemophilia. Girls were not invited to camp. Siblings weren’t invited either. Today we have a better understanding of how girls are affected by bleeding disorders, especially as more than carriers, and are now included. We also better understand how a bleeding disorder diagnosis affects the whole family, so siblings are also invited to share the camp experience.
Despite the challenges of those days, it was deemed important enough to gather this group of young patients for a week every summer with the purpose of socializing, bonding, and feeling less isolated with their medical conditions. And so CWJ was started. Over the years, we have learned to overcome obstacles and have adapted to many changes. We continue to look toward the future and move forward.
Camp was founded to give boys with hemophilia an opportunity to be with others just like them—to talk, laugh, try new things, support each other, bond, and just be! At its inception, the mission was to encompass a safe and fun environment, encourage peer relationships, and increase self-confidence and independence.
Although many changes have been implemented along the way, the mission of camp remains the same—to encompass a safe and fun environment, encourage peer relationships, and increase self-confidence and independence. Plenty of education has been added. Kids learn more about managing their disorder and camp is where many first learn to self-infuse.
The first time I volunteered at camp was in 2009. I wanted to bring energy and inspiration, and be a mentor. I also wanted to gain an understanding of what kids with a bleeding disorder deal with and why camp is magical to them. By offering a safe environment and gentle suggestions, camp helps kids think differently, allowing them to go outside their comfort zones to try new activities and learn and share with one another without judgment.
I want to leave a legacy of having done the best I could to help kids develop and reach whatever goals they set for themselves. The good stuff is when a camp activity applies to life at home, and a camper declares, “I never thought I could, but I can, and I did!” Watching a child grow to adulthood and graduate from being a camper to a counselor is especially rewarding.
On their 50th anniversary, we thank the CWJ pioneers who paved the way with such bravery for future generations of camp goers! We celebrate every attendee, family, caregiver, medical staff, and volunteer who has been associated with the success of Camp Warren Jyrch!
With gratitude and appreciation, I am glad to have been a part of it!
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