Finally, there was a place where it didn’t feel so lonely.
Jordan Roddie had lived his entire life with sickle cell disease. The genetic blood disease meant he had to take cautions other kids didn’t think about.
Jordan, a sixth-grade Indianapolis resident, was comfortable with who he was. But he wished there other kids his age who knew what he went through on a daily basis.
Jordan found a place at Camp Silver Moon, a program for young Indiana children who have been diagnosed with sickle cell disease.
“It was really fun. I got to see people just like me. We understand each other,” he said.
The camp is organized by the Indiana Hemophilia and Thrombosis Center, and gives young people ages 7 to 16 the chance to swim, kayak, sing silly songs and do most of the traditional activities associated with summer camp — all in a safe environment with their peers.
The key to the weeklong camp is that opportunity for kids with sickle cell disease to be around one another.
“Attending a regular summer camp is out of reach for most of these kids. It would be putting them in a place where they’re not going to be successful,” said Kimber Blackwell, a physician’s assistant with the Indiana Hemophilia and Thrombosis Center. “So let’s take all of these kids who have the same medical condition, and send them all to camp together. They’re really understanding of each other; they get it.”
Sickle cell disease is a genetic condition in which the body creates misformed red blood cells called hemoglobin. The cells take on a crescent shape, which gives the disease its name.
Because of the shape, it is unable to move through some of the smallest blood vessels in the body. This can lead to those who have sickle cell disease to not get enough oxygen to all parts of the body, and suffer from dehydration, Blackwell said.
“When those cells get stuck, that’s what causes problems and pain. And because blood vessels go everywhere in the body, they can have a lot of different complications,” she said. “Our kids are at greater risk of having strokes, increased risk of lung complications. It depends on the body part the sickling happens in.”
The disease is most commonly seen in individuals of African American, Hispanic/Latino, South Asian and Middle Eastern descent. Research estimates that about 1,500 Indiana residents are currently living with it.
Because relatively few people in Indiana are diagnosed with it, it can be hard to connect with other patients. That is especially true for children.
“A lot of kids who have sickle cell disease don’t know any other kids who have it. They probably don’t have a sibling who has it,” Blackwell said.
For Jordan, the disease has forced him to recognize there are some activities he just can’t do. He still loves to to run around and play basketball, baseball and football, ride his bike, or take a breather and play video games.
But he also understands that he cannot push himself too far.
“As long as I’m keeping hydrated and eating right, watching myself to make sure I don’t overdo it, it doesn’t affect me too much,” he said.
Jordan’s doctor at the Indiana Hemophilia and Thrombosis Center told his family about Camp Silver Moon.
“I had never been to camp before, and when I looked through the brochure, it looked really fun,” he said. “At first I was nervous, but then I realized I could meet people who were just like me, and we’d become good friends. And that’s what turned out happening.”
The program was envisioned as a way for kids like Jordan to play, created and learn together. Held yearly on the shores of Lake Tippecanoe at Camp Crosley YMCA in northern Indiana, participants take part in a full slate of activities, from taking on craft projects to playing in the water to doing a climbing wall.
But working side-by-side with each of them is a host of medical personnel from the Indiana Hemophilia and Thrombosis Center who ensure they stay safe throughout the week.
“We can put precautions in place that are good for all kids with sickle cell,” Blackwell said.
This year’s camp will be held from June 4 to 9, and registration is still available. Jordan is excited to go back again this year, and would recommend any other kids like him to give it a try.
“If you go there and have sickle cell, it’s actually really fun. Don’t be nervous, because you’ll meet really good people, especially the counselors and doctors. They take very good care of you, and have activities to do,” he said.
AT A GLANCE
Camp Silver Moon
What: A one-of-a-kind summer experience for children ages 7-16 with sickle cell disease, as well as for their siblings.
When: June 4-9
Where: Camp Crosley YMCA, North Webster
Who: The camp is organized by the Indiana Hemophilia and Thrombosis Center
How to learn more, or register: ihtc.org/campsilvermoon