One-of-a-kind summer experience for kids with Sickle Cell Disease

Sickle cell disease, a genetic disease that causes a misshaping of certain blood cells, affects millions of people throughout the world.

According to the Centers for Disease Control and Prevention, the disease occurs in about 1 in every 365 African-American births, with more than 16,000 Hispanic Americans also being born with the disease.

It is estimated at around 1500 Hoosiers are living with the disease, leaving many to feel isolated in their battle with sickle cell disease.

But this summer, Indiana Hemophilia and Thrombosis Center, or ITHC, is hosting a camp for kids who battle with the disease.

Kimber Blackwell and Jordan and Kelly Ronnie joined News 8 to talk about Camp Silver Moon and the camp’s goal of helping kids with sickle cell disease grow, bond, and make memories in the face of the fight.

Jordan, who is a sixth grader living with the disease, shares how he is happy and thriving, but says living with the disease is hard to think through.

Jordan’s Aunt, Kelly, talks about how living with Jordan has helped her advocate for the disease, learn what the triggers and pains of sickle cell disease can be like, and how to treat that pain. Jordan adds that the pain affects many parts of his life, like playing sports.

But being around other kids with the disease at Camp Silver Moon, Kelly says, helps Jordan not feel alone in his battle, and can hear how other kids have experienced this journey.

Blackwell, a physician assistant at ITHC, says the camp works to teach self-management skills to kids ages 7 to 16, working with them to become more independent while living with the disease and be more confident in decisions they make to take care of themselves, because “it’s OK to make those decisions.”

Camp Silver Moon, located in North Webster, Indiana, runs from June 4-9 and is open to kids 7 to 16.