By Ann Marie Shambaugh
Jami and Kara Casavan know what it’s like to spend most of their time at the hospital.
Their son, Cooper, began showing signs of mitochondrial disease and Chiari malformation as an infant, and the Whitestown couple spent much of their time by his side at Riley Hospital for Children until his death at age 6 in October 2013.
Now, the Casavans are honoring Cooper’s memory by improving the hospital experience for other families at Riley. They formed a nonprofit called Cooper’s Troopers to ensure that their son’s spirit is never forgotten.
“He was all boy, that’s for sure,” Jami Casavan said. “He was crazy, a daredevil, loved baseball and golf and Ninja Turtles and Spiderman. He wanted to be bitten by a radioactive spider.”
Cooper’s Troopers began as a fundraising team for Make-A-Wish and United Mitochondrial Disease Foundation walks, and the Casavans felt the moniker was a perfect fit for the foundation.
“After he passed away, we felt it was important to keep the name since we were always so grateful for everyone’s support,” Kara said.
A ‘perfect’ project
The Casavans honored Cooper’s first two birthdays after his death by collecting toys for Riley patients, but in 2016 they decided to do something that would make an even bigger impact.
During his time at Riley, Cooper spent a lot of time in the urology department. Kara said he often had to undergo an “absolutely horrible test” in the urodynamics/procedure room, a sterile-looking space with plain white walls and intimidating machinery.
In honor of Cooper’s ninth birthday in 2016, the Casavans decided to help fund the painting of a mural on the walls of the room to bring smiles and comfort to other children and their families in difficult situations.
“We’ve been in that room. We also had a lot of mitochondrial disease friends and other medical needs friends who go into that room a lot, so we thought, ‘perfect,’” Kara said.
They launched a GoFundMe online campaign to help cover costs of the project, and in June 2016 an artist transformed the sterile, white walls into an underwater adventure. Since then, they’ve received encouraging feedback from families who said the mural made the process a more bearable experience.
“It’s nice to know that will always be there,” Kara said.
Now that the mural is complete, Cooper’s Troopers has undertaken another project. Since announcing the initiative on the third anniversary of Cooper’s death, the Casavans have been collecting a variety of practical clothing items to stock Cooper’s Closet, which will provide clean, fresh garments for families who unexpectedly find themselves at the hospital.
The Casavans only had a 30- to 45-minute drive to Riley, but many families are unable to return home for clean clothes while their child is in the hospital.
“Even though we lived locally, there were still many times when I had to sleep in the same clothing for a few days because of an unexpected admission,” Kara said. “Also, there are times when the clothing becomes soiled, especially when caring for your sick or injured child. This will help in these situations as well.”
Cooper’s Troopers has collected approximately $500 and more than 70 new items for the closet, which is expected to open when enough items have been collected to stock the closet for at least three months. The clothing will be free for Riley families, and they can keep whatever they take.
Clothing donations of all sizes can be dropped off or mailed to Whitestown Town Hall, 6210 Veterans Dr.
“This is one of my favorite parts of the project. Initially, the response was so great that we needed a safe address for people to mail the items to. I reached out to Whitestown and they graciously offered to let us use the address of the town hall,” Kara said. “We are so grateful that they were so willing to support this project in such a helpful way.”
Cooper began exhibiting symptoms of a Chiari malformation and mitochondrial disease around his first birthday, but doctors didn’t confirm his diagnosis until he turned 3 years old.
“It was scary, because we knew there’s such a wide spectrum with (mitochondrial disease),” Jami Casavan said. “With the exception of how tired he got, if you didn’t lift up his shirt or pay attention to his feeding backpack, a lot of times you wouldn’t know he had anything going on.”
A Chiari malformation is a defect in the structure of the brain that can cause headaches, numbness and other problems. Mitochondrial disease is caused by failures of the mitochondria, which are present in most cells and create energy needed for vital organs to function. It can be difficult to diagnose and affects everyone differently. Its symptoms can include seizures, strokes, developmental delays, inability to walk and many other life-threatening problems.
As Cooper spent months of his life in the hospital, Jami and Kara did everything they could to keep life as normal as possible for him and their daughter, Kaitlin, 13, who attended Zionsville West Middle School but is now taking classes online so she can participate in the pre-professional day program at Indiana Ballet Conservatory.
“I went on her school field trip the day before he died,” Kara said. “It was hard, but it was a decision we made because we still are her parents, too, and we still have to parent her, regardless of what happens.”
Even when Cooper took a turn for the worse in October 2013, his parents had hope that he would pull through as he had so many times before.
“Right up to the second that he crashed, we were going home at some point,” Jami said. “We just never even thought what was going on wasn’t going to get better enough that we weren’t going to go home.”
Before Cooper died, the Casavans had begun building a home in Whitestown’s Eagle’s Nest neighborhood.
“He was so excited about moving here and building a house. He loved visiting the model and helping us look at lots,” Kara said. “Unfortunately, he would never see us move into the neighborhood, but we knew it was what was best for our family. To that point, he was right. We have been so lucky to move into such a great neighborhood.”
How to help
To make a donation to Cooper’s Closet, drop off or mail items to Whitestown Town Hall, 6210 Veterans Dr., Whitestown. Monetary gifts also are accepted.
Most needed include new:
- Comfortable shirts
- Comfortable pants
- Pajama pants
Make sure items are clearly marked for “Cooper’s Closet.”
Back at Riley
Although it’s been more than three years since Cooper’s death, Kara still spends a great deal of time at Riley.
In March 2015, she accepted the job of pediatric practice liaison for the IU School of Medicine Dept. of Pediatrics, where she works to implement programs and processes that aim to improve the health of children in specific ways. Currently, they are working to reduce infant mortality.
“At work I see a lot of Cooper’s medical team,” Kara said. “It’s very rewarding to be able to work alongside them on projects and speak with them at different presentations.”