At noon Saturday around the world, red balloons were released into the air to bring awareness to Juvenile Myositis. In Warsaw, 150 were released at Dorothy’s Hallmark/Party Shop. Photo by David Slone, Times-Union
At noon Saturday around the world, red balloons were released into the air to bring awareness to Juvenile Myositis. In Warsaw, 150 were released at Dorothy’s Hallmark/Party Shop. Photo by David Slone, Times-Union
Kennedy. Mason. Casey. Jenn. Mikey.
Those are just some of the names of children who have died from complications of Juvenile Dermatomyositis.
At noon Saturday all around the world, red balloons were released into the air to honor all the kids who have died from Juvenile Myositis and to bring awareness of the disease to the public. In Warsaw, 150 balloons were released at Dorothy's Hallmark/Party Shop.
Dorothy’s Hallmark/Party Shop partnered with the event by sharing the cost of the ballons and donating a percentage of Saturday’s sales to Cure JM.
Juvenile Myositis, including Juvenile Dermatomyositis and Juvenile Polymyositis, is a group of rare and life-threatening autoimmune conditions affecting approximately 17,000 children in the United States alone, according to curejm.org Weak muscles and skin rash are the primary symptoms of JDM, while muscle weakness without a rash is the primary symptom of JPM.
Even within these designations, JM affects every child differently. Some children experience a mild form of the disease, while others follow a more severe and potentially more debilitating course.
According to an email from Kristine Alderfer, of Winona Lake, last week, “our JDM family lost another child. She was a 13-year-old girl in California. Her name was Kennedy and she had only been diagnosed three months prior.”
During Saturday’s balloon release, Kristine said the statistic that only 3 out of 1 million children get the disease was staggering to her.
Katherine Alderfer, 7, the daughter of Kristine and Alan Alderfer, was diagnosed with JDM at 4 years old. From the outside, she looks like a normal, healthy child. On the inside, however, her body is fighting the autoimmune disorder. Juvenile dermatomyositis is called an “orphan disease” because it affects so few children that it’s not on the radar for big companies to sponsor fighting it.
The purpose of Saturday’s event, Kristine said, was also to bring awareness of the disease not only to the public but also those in the medical profession. If a child is diagnosed early with the disease, that will help with their survival rate.
As for Katherine, Kristine said, “She’s doing great right now. She’s really improving. Her numbers look great. We’re going down to Riley (Hospital for Children) every five to six weeks.”
Everyone at the balloon launch wrote a message on their balloons. Some wrote Katherine’s name, while others wrote “Cure JM” or longer messages.
Before the balloons were launched, Kristine explained the significance of the red balloon. It symbolizes the joy and carefree life of a child, the one that JDM can take away. It also symbolizes the courage, resilience and strength that lift families and friends up to fight this disease and find a cure.
“When we safely release the red balloons to honor our Cure JM angels, we are sending our love and heartfelt messages. These precious children are now free to soar through the clouds with the red balloons. They are always with us in our hearts,” she previously stated in an email.
Many of the Alderfer’s friends and family attended Saturday’s event.
“I think it’s important as a commnity we support each other, in the good and the bad,” said Kate Nowak. “I’ve known Kristine for a while at church. I think it’s important we support each other as a church family as well.”
Jane Burch has worked for Alan for 15 years. She said she’s seen the Alderfer family go through a lot including finding out that Katherine had the “terrible disease and no one knew what it was.” She said they’ve been good at keeping those concerned informed of Katherine’s condition, and the Alderfers’ two girls are like her own grandchildren.
Every year, Burch said, she makes an effort to donate to Riley and JM.
“I’ve watched them go through such hard and difficult times,” she said.
Donations to help fight the disease can be made at curejm.org