Published: LifeLines for Health, vol. 3 (Summer 2014)

They say that a picture is worth a thousand words. But what if three people were to describe that same picture? Is it still a thousand words, or is it now three-thousand? After all, we all seem to hold different viewpoints on everything from the sun to the bumps on a crocodile’s back. The Zhao family of Pennsylvania has 3 stories to share, but all about the same experience. Learn how Inhibitor Family Camp means a little something different to each of them.

A Mom’s Perspective
by Sha Ha

“We come from the mountains, living in the mountains. Go back to the mountains, and turn the world around.” (Clap! Clap! Clap!) Singing coming from the seats in front of me woke me up on a late night flighthomefromCalifornia.Obviously, Ryan and Lily were still having fun because of the new friends they made from the weekend. I smiled, but felt tears coming down my cheeks. Images from the past 13 years flashed back through my mind. I remembered how my world almost collapsed when my son Ryan, six months after birth, developed a huge hematoma in his right eye from a slight bump of his head on the crib. Ryan bled for more than ten days while my husband and I waited desperately for a diagnosis. To this day, the image of Ryan with a bloody eye still wakes me up at night from time to time. Ryan was eventually diagnosed with severe Hemophilia A, and later with inhibitors. In the years that followed, emergency room and operating room visits almost became a routine in our lives. I often couldn’t remember how many ports Ryan had during that time, only to be reminded by counting the scars on his chest. Because he didn’t respond to the immune tolerance treatments, Ryan kept bleeding in his joints, muscle, neck, and most scary of all, his spinal cord. We were drained, helpless, and alone. We didn’t know what the future would hold. We were desperate to find other families we could talk to. We learned about the Inhibitor Family Camp in 2012 and decided to give it a try, not sure how the experience would turn out. We came back with full luggage: a Big Stick Award for Ryan for his first self- infusion and a list of families who rode the same roller coaster as we did and who taught us that there were no hurdles we could not overcome. I made a photobook of this life-changing event and have formed a habit to open it whenever I need an extra dose of encouragement.

We have become loyal campers ever since. This year we went to The Painted Turtle, a beautiful camp snuggled against the mountains of Southern California. We met new families and reunited with old ones. The children’s cheers and laughter echoed all weekend long in the mountains and on the lake. We the parents, gathered at evening parents’ café. There, we no longer felt lonely and helpless. There, families from all over the country bonded together. There, we saw a future for our kids.

“Our kids may not run as fast as others, but their journey through life will be as rich as anyone else’s.”

“We come from the Turtle, living in the Turtle. Go out from the Turtle, and turn the world around.” (Clap! Clap! Clap!) The kids’ humming of the camp song brought me back to the airplane ride. Our world has indeed been turned around - by Inhibitor Family Camp. The world has become smallerbecause we have gotten to know families from other parts of the country; the world has become warmer because we no longer feel alone; the world has become brighter because we have built such strong community bonds. Thank you, CHES, The Painted Turtle, and the wonderful volunteers. You have made us stronger. We have a mission to accomplish and it is every bit POSSIBLE!

A Camper’s Perspective
by Ryan Zhao

The trip to the Painted Turtle was a wonderful experience for me. The best thing about it was that I felt a sense of belonging. In normal camps, I always feel awkward, or held back because of my hemophilia. I was different from everyone else and that created a barrier between other campers and me. At the Painted Turtle, however, I was free! I could do what I really wanted to do, instead of trying to act like a “normal” person. I could talk to others about hemophilia as opposed to hiding it. Everyone there had experienced the challenges of hemophilia and an inhibitor. That brought us closer together and allowed me to make many new friends.

The activities at the Painted Turtle were also amazing! They had everything from fishing to woodshop to horseback riding. There was a gym for the more active people, and a wide outdoor pavilion at arts and crafts for those who like to be indoors. I loved the woodshop and the arts and crafts center. They had such a wide variety of things to do. I could spend days there without ever getting bored! At the woodshop, my mom and I worked hard on a Pinewood Derby car. My mom had a great idea of making a painted turtle, and I turned it into a reality. We called our car “The Painted Turtle,” feeling confident that it would be a great ride. And it sure was! At the Pinewood Derby where the whole camp gathered, each family participated in the race. Creativity and competitiveness ran high. Pun’s humorous commentary filled the room with laughter. The competition was friendly but intense. In the end, “The Painted Turtle” won! That is a moment I will treasure for the rest of my life. Finally, the trip would not have been the same without the wonderful peoplethere at camp. The CHESorganizers, camp staff andactivity pals were so nice! In the woodshop, Pops was a big help. He knew how to use the woodcutting tools,and helped me shape my derby car. Pun’s puns filled my days with laughter and taught me many great life lessons too. The family pals were like family. Kelsie and K-Pod accompanied me everywhere and showed me where everything was. They were like the big sisters I always wanted to have. They made camp feel like a vacation home. The three days at the Painted Turtle passed too fast. As I waved good-bye to the red cabins, the warm California sun, and the many new friends, I promised myself that, “Painted Turtle, I WILL BE BACK!”

A Sibling’s Perspective
by Lily Zhao

This past April, my family went to the Painted Turtle. We went because my brother, Ryan, has hemophilia with an inhibitor. My family and I had so much fun at the Painted Turtle. I wanted to stay there for another week!

The activities were my favorite part. There was archery, boating, fishing, wood shop, arts and crafts, and horseback riding. In the evening, we also had a carnival and stage night. I liked all of the activities, but if Ihadtopickmy three favorites, I would choose horseback riding, the carnival, and arts and crafts. In horseback riding, we got to ride on a horse/pony and go through obstacles. The horse I rode on was named Diamond. In arts and crafts, you could make almost anything you wanted. You could even decorate a rock and put it in the “rock garden.” The carnival was so much fun. There were fun games, dancing and even prizes.

Other things I liked about the Painted Turtle were the weather and the cabins. The weather was warm and breezy, perfect for a hike. The cabins were amazing! They were nice and cozy. Last but not least (which I thought was the best), was having the family pals and staff joining us. They were helpful, funny, and kind. “Pun” and “Pops” were very funny and exciting. Kelsie (our family pal) was like a big sister. We were sad she had to leave early.“Pun”toldveryfunnyjokes.Forexample,whenIfirstmet him he said that my mom was my older sister and that I was 29 years old. I had a very good time at the Painted Turtle. I hope next year my family will come here again!