Jami Casavan doesn’t get to use many excuses these days. His son made sure of that. See, Cooper Casavan was brave. Had to be. Through the worst of what life could throw at him, Cooper never took on a “woe is me” attitude.
Cooper – or Coop – was diagnosed with Chiari malformation and mitochondrial disease when he was less than a year old. His mom said he was smart, that he knew what was going on when he went into the operating room or was having a procedure. But he never flinched, never backed down.
So, back to Jami. When he’s having a routine procedure these days – blood work or a shot – one thought goes through his head:
“If my 6-year-old could do this with no issues …”
The thought doesn’t need to be finished. No excuses. No time to be fearful about little things.
“Coop is still an inspiration for when we are scared just to be brave,” said Kara Casavan, Cooper’s mother.
Cooper’s legacy will be a lot of things. It’ll be about perseverance and bravery. It’ll be his humor amidst challenges.
And part of his legacy will always be about giving back to the hospital that he grew to love.
Cooper was born healthy to Indianapolis-area residents Kara and Jami on July 16, 2007. He had an older sister, Katie, who is now 13 years old. When he was less than a year old, he started having symptoms. A pediatrician saw Cooper and one test result led to another as the Casavans learned more about his diagnosis. When they knew he needed more intensive care, the Casavans moved all Cooper’s care to Riley.
Coop’s first extended stay at Riley Hospital for Children at IU Health was in 2008. And he spent a lot of time there since. For Cooper, Riley became a second home.
“To him it was not a place where bad things happen,” Kara said. “It was a place where he could go to feel better. It was a place he could go to be with his friends. It was a place where even if he was feeling bad, he knew they were trying to help him.”
Cooper was all boy, his mom said.
He liked to play jokes, liked to tease girls. He liked Teenage Mutant Ninja Turtles and Spider-Man, superheroes and baseball.
And he was pretty hilarious. Had a sarcastic, dry sense of humor. He had a sign on his door of his room on 8E at Riley: “No girls allowed.”
The female physicians and nurses played along. They had to plead with him to be allowed in his room. Sometimes, they’d wear a fake mustache to gain entry. Cooper loved it, loved the idea that the sign supposedly bothered people.
Another time, a resident flipped on the lights in the morning and pushed on Coop’s belly, something they always did. The resident asked Coop, “Does it hurt anywhere?”
“Well, it wasn’t hurting until you flicked on the lights and pushed on my belly!” Coop retorted.
Once, Cooper had the chance to talk on the phone with Peyton Manning, an opportunity set up by the assistant principal at Coop’s school. Manning wanted Cooper to say he liked the Colts or liked his alma mater, Tennessee. Cooper didn’t budge: “No, I like Purdue” he kept telling Manning.
Maybe the humor was just an element of Cooper’s courage. Life was difficult.
He spent three Thanksgivings at Riley. He went to preschool occasionally, did a month and a half of part-time kindergarten. He Skyped in to his classroom for his first day of first grade.
He was often on contact precaution, so he’d miss out on events even at Riley. But nurses and the staff would make sure he was included – they’d bring him stuff up from the parties.
Of course, courage isn’t just for children with Chiari malformation or mitochondrial disease.
“There are kids who are awesome and brave that have numerous other disorders,” Kara said. “I think Cooper’s journey is more about the perseverance piece of it.”
Cooper passed away on Oct. 12, 2013. He was six years old.
A month after Cooper’s passing, Katie was hanging out with her friends. They decided to make rainbow loom bracelets. They would sell ‘em. Raise money for Riley.
The project took off.
The Casavans bought two wagons for Riley in Cooper’s name. And Cooper’s Troopers—a name that started during Cooper’s journey—became even more about giving back.
For Christmas in 2013, they bought toys for the playroom on 8E. The family bought ones they thought Cooper would have liked. They continue to donate toys on Cooper’s birthday and on Christmas.
In 2016, Kara reached out to Dr. Mark Cain in the Urology Department about a bigger project. Dr. Cain suggested a mural for the urodynamics/procedure room, a room in which Cooper had many procedures done.
The Casavans raised $1,500 for the mural, and an artist completed an under-the-sea theme that covers the walls in the room.
Now, the family is turning their attention to a new project – Cooper’s Closet. They want to stock a closet with new clothes for families that find themselves at Riley unexpectedly. Pajamas, comfy clothes, undergarments, socks – items for families to get what they need.
The Casavans have made a habit of giving back.
“If you are going to have a child with a chronic or terminal medical condition, then the hospital system that takes care of them becomes their second home,” Kara said. “We benefitted from having such an amazing team and support network there that I wanted other families to have that.”
Cooper’s legacy is living on. Of course it is.
Through toys and in a closet. On a mural.
And in lessons of bravery and perseverance.
“He probably went through more than we will ever know pain-wise and how tough he was through it,” Kara said. “There were many times he would tell us that if they had to do something to him care-wise, he would tell us, ‘It’s OK.’ He’d be comforting us. He never thought, ‘Woe is me, why is this happening?’ He tried to calm everyone else down and tried to tell everyone else it was OK.”