Riley Children’s Foundation Helps Elementary Student Stay Connected to Classmates
Writer / Christy Heitger-Ewing
For nine years Kayleen Jones has served as a social worker at Riley Hospital for Children. She has seen kids who have endured terrible diagnoses, cancers and terminal illnesses. When her own daughter Charleigh started having a series of health issues that required a battery of tests, Jones was grateful to have the experts at Riley looking out for her. Although Charleigh’s problems are less severe than some Jones has seen during her career, for a 7-year-old, it has still been a lot.
“Her health issues have really impacted her life,” Jones says.
Those issues started when Charleigh was just a baby and struggled to gain weight. Following that, she began regularly experiencing respiratory problems. She was also battling digestive issues, and yet despite undergoing tests, doctors couldn’t ascertain what was causing her problems and how they were related. When Charleigh was 3, allergy testing concluded that she was allergic to dogs and that’s what was causing all of her troubles. The family had two canines, which they re-homed to a friend. Still, despite the dogs’ absence, Charleigh’s health issues didn’t improve. More testing followed. Ultimately, doctors diagnosed her respiratory ailments as asthma even though they didn’t present as typical asthma. They also determined that she had some immune deficiencies that made her susceptible to illnesses. On top of all that, they found she had irritable bowel syndrome (IBS).
“It was three separate things, not all interrelated as had originally been suspected,” Jones says.
Then in April, she had to be hospitalized because they couldn’t get her IBS under control using medication. Therefore, doctors had to make a tunnel in her colon and put a tube in it. Now, every night Jones and her husband Devon must put medications through the tube that goes directly to the area that needs the most help.
Though they expect surgery to help, it’s not a quick fix. Charleigh will have to go to the clinic every three months. She will have the tube for at least the next three years. At that point, doctors will re-evaluate to see how things are going.
Right now doctors are still trying to figure out the right medicinal protocol. As a result, she misses school a lot. These extended school absences are how Holly Clark’s first-grade class at Cedar Elementary was introduced to Riley Children’s Foundation’s Bear in the Chair program. This program was designed to help a student who must miss school for an extended period of time feel connected to his or her classmates. To qualify for the program, a student must miss at least two weeks of school consecutively for an illness or surgery. Such was the case for Charleigh. Therefore, the team at Riley supplied a giant stuffed bear to her classroom, explaining that the bear would sit in Charleigh’s seat while she was absent. The students took the bear with them to “specials” – classes like music and art – as well as the cafeteria and recess, to help them feel connected with their friend.
“This program has been a lifesaver for Charleigh’s emotional and mental health,” Jones says.
Several weeks after her surgery, Jones told her daughter that she had to go back to the doctor for a test that would cause her to miss half the school day.
“At first she was so sad, but I reminded her that her bear would keep her chair warm and that her friends could take the bear to specials with them,” Jones says. “That quickly turned her mood around.”
Charleigh’s bear, which her classmates named Harley, was delivered to her classroom on April 28. Students were excited not only to meet their new fuzzy classmate, but also to see Charleigh on a Zoom call during the time when it was delivered.
“The class does this thing called GoNoodle, which is a YouTube link that gets kids dancing and moving in the middle of the day when they need a brain break,” Jones says. “Mrs. Clark showed me a video of a student holding Harley doing the GoNoodle.”
Avon students in grades kindergarten through 8 participate in a field day every May, just before the close of the school year. All students receive a free field-day T-shirt, and Cedar Elementary made sure to get one for Harley.
“Yes, Harley participated in field day,” Jones says.
When the school year ended, Harley came home to live with Charleigh. Though he takes up some space, Charleigh’s parents are happy to accommodate for their little girl, whom Jones describes as happy, outgoing and friendly.
“She loves life so much and has the biggest heart,” Jones says. “She’s the sweetest little thing. Charleigh is the strongest, most resilient little girl I’ve ever known. It doesn’t matter what she’s going through, she always has a smile on her face.”
She participates in ballet, cheerleading and gymnastics. She also loves to dress up in fancy costumes, especially Disney princess dresses.
“She’s as girly as they come,” Jones says.
Her two favorite subjects are math and art. “She’s really good at math and loves to go around telling people equations,” Jones says. “She also is a little artist, and is always drawing, painting or doing some type of craft.”
Not surprisingly, with a personality like this, Charleigh does not lack friends.
“She loves everyone in her class,” Jones says. “In fact, if you ask her who her best friend is, she’ll literally name every one of her classmates.”
Riley partners with Speedway gas stations, who raise money to purchase these giant bears.
“They have a limited number of bears, and I wish they had more because there are so many more kids who could benefit from them,” Jones says.
If you’ve ever been at the checkout counter at a Speedway or surrounding business, the staff member there may have asked you if you’d like to donate to Riley. Now you know why.
“Sometimes people are reluctant to donate because they don’t know the impact of their donation,” Jones says. “Trust me. It’s a great cause that makes a huge difference in these kids’ lives.”
For more info on Riley Children’s Foundation, go to rileykids.org.