Butterfly, Fly Away: The Story of Olivia Caldwell and Her Foundation
Olivia loved butterflies. She had a whole wall dedicated to them in her room. There was just something about those majestic, colorful creatures that made the little girl smile more than anything else. And for Olivia and her family, smiling was hard to come by for a while.
It was, inarguably, the worst thing that could ever happen to a parent. When Katie Burchett was told that her 4-month-old baby girl, Olivia, had brain cancer, time stood still. 16 months later, Olivia passed away and Katie was faced with a choice.
The first choice was to allow herself to be enraptured by her grief. She could have let the pain, the sadness, the anger, the not-fair-of-it-all consume her. That would be the easy choice, and nobody would blame her. But there was another choice, and that choice was a little harder. That choice took a little (no, a lot) more strength. That choice involved wiping away the tears, leaning on friends, family, and the community, and creating something that was bigger than her; something that would honor Olivia and maybe, just maybe, help somebody else.
So she made a choice and, in that choice, the Olivia Caldwell Foundation was born.
"When Olivia was four months old, she was diagnosed with brain cancer, and she went on to battle for her life for 16 months before she passed away at just 20 months old in October," Katie Burchett, founder of the Olivia Caldwell Foundation, told K2 Radio news. "I started the foundation just a couple of weeks after she passed away, just as a way to make a difference in her name, but also it was a really tangible way for me to keep being her mom; that's how it all started, just with the hopes that we could make a difference, so that her battle was not in vain."
They have made a difference. In the nine years since its inception, the Olivia Caldwell Foundation has raised nearly a million dollars for pediatric cancer research and programs. Many of these programs directly improve the lives of children battling cancer and other serious diseases in Wyoming and beyond.
But the process has been a long one.
"It's really interesting," Burchett said. "I was pretty young. I think I was 26 years old when we started the foundation, and I had never even been involved in non-profit work before. So once we decided that we wanted to start the foundation, it was like, 'Okay, we need the people to help us because I have no clue what I'm doing.'"
So first, Burchett and her team connected with a legal office in Rawlins, Wyoming who helped them get established legally. The law firm recommended a CPA firm, also in Rawlins, that would handle all of their financials and their 501- C3 filings.
Following that, they had to build a Board of Directors.
"We got all the legal things taken care of and we established a board, which was filled with people who had known and loved Olivia during her life," Burchett said. "And them we just really tried to figure things out as we went. We joke that I learned a lot from 'How to Start a Non-Profit for Dummies,' but I actually did read a book like that! We just tried to figure out what was gonna make the most sense. We knew that we wanted to fund pediatric cancer research, but we had no idea what it would grow into and what it would become over the years, because we really didn't know what we were doing back then."
Despite that, the Olivia Caldwell Foundation became incredibly successful, providing almost a million dollars and partnering with various other non-profit organizations in Natrona County and surrounding areas.
The Olivia Caldwell Foundation has partnered with Children's Hospital Colorado and the Wyoming Medical Center to open a pediatric specialty outreach clinic in Casper, which brings up doctors from the Children's Hospital to see patients locally for follow-up visits so that families don't have to spend as much time and money traveling outside of Wyoming. They have also hired patient advocates to guide families through, what could be, the hardest periods of their lives.
"We know from my own experiences with my kids that, when your child is sick, there are all of these incredible resources that already exist in our state that could help you, but when you're really overwhelmed and your child has just been diagnosed and you're barely making it from day to day, you don't have the capacity to research what those resources are," Burchett said. "You don't have the time to fill out the paperwork or you don't have people that help you through that process, and you don't even know where to begin. So we hired a patient advocate on our staff, and now we've grown to have two."
But what does that program actually do?
"It's a free program that supports families who have a child with a chronic or complex medical illness, and it's available statewide," Burchett shared. "It's not specific to any one kind of diagnosis. There are no income restrictions. Their whole job is to help connect families to the resources that exist to help the,. That can be anything from providing for travel expenses or household bills, to helping them connect with the best counselors, to filling out things like EAP applications and navigating through Medicaid. Anything that you could think of, they have helped families navigate through that difficult time."
And, really, that's why the Olivia Caldwell Foundation exists; to let families know that, even if their darkest, scariest, most harrowing times, they are not alone. There are people who know what they're going through and want to help. The Olivia Caldwell Foundation exists to be a resource for families and to show them that help is out there; that there's a hand to hold throughout their journey.
The community of Casper, its people, are some of the biggest partners of the Olivia Caldwell Foundation. Their a paramount part of the journey. And events like the Butterfly Ball are ways that the community can give back to the Olivia Caldwell Foundation, while also getting to experience a beautiful night on the town and, possibly, a dream vacation.
"This is our sixth year doing the Butterfly Ball," Burchett said. "Just a little over six years ago, we were talking as a board and staff about what we wanted to do, fundraiser-wise, and the idea of an adult prom came up and it made a lot of sense because there were so many elements of it that were very true to who my daughter was What makes the Butterfly Ball so special to me is that it's about people getting dressed up for a really great cause, and it includes butterflies. My little girl had a butterfly wall in her bedroom, and lots of decorations. One of our favorite memories was going to the butterfly pavilion. It was one of the last really good days that she had before the cancer started to take her away from me.
And then, you add in the fact that she absolutely loved to get dressed up. I mean, anytime that I would put her in a dress and put a bow on her head, she would want to stop in a mirror and pose so she could see how pretty she looked. So it just made sense to have a fundraiser that's right around the time of her birthday, and just celebrate all the things that she would love."
The Butterfly Ball is happening on Saturday, January 28 2023 at the Ford Wyoming Center. Tickets sold out quickly, because everybody knows how important the Olivia Caldwell Foundation is to the community. Plus, the event is just really, really fun. It's not just an excuse to get dolled up and go dancing, however. There's another purpose behind it as well. Casper couples raise money to see who gets voted as the Prom King and Queen. Every dollar they earn is a vote for them and the couples have already raised more than $2,000.
All of that money, plus money from the tickets, a silent auction, prom photos, and more make this event the fundraiser for the Olivia Caldwell Foundation. It's a way for the foundation to earn the money they need to keep running, year after year. But it's also a way for Katie to celebrate her daughter, a beautiful little girl who was gone too soon.
Katie Burchett didn't get to be a mom to Olivia for very long. But, through the foundation, she gets to feel her daughter every single day, as they work together to make the journey a little less rocky for other families.
"It was really hard for me to think about not taking care of her every day, because I'd been her primary caregiver; I was a stay-at-home mom and I went to all of her chemo appointments, I gave her all of her meds, I was just with her all of the time," Burchett shared. "And it was just really horrible to think about, like, 'God, she's gone and I can't take care of her at all now.' So starting the foundation was a way that I could still really, tangibly feel like I was being her mom. It gave me a way that I could channel all of that love that I had for her without just feeling like I lost her completely."
Olivia isn't lost, not really. She's a part of every decision her mom makes, every dollar that the foundation earns, every life that it changes. She's a memory, a song, a motivator. Olivia's story, her foundation, has impacted countless Wyoming families for the better. She has had a hand in the lives of so many other children being saved.
Olivia Caldwell's life was a tragically short one but, like a caterpillar building its cocoon and emerging a season later, what has come out of her life has been nothing short of breathtaking. Olivia's life, her foundation, her story is like a butterfly, soaring above all of us, dropping in from time to time to remind us that beauty can emerge from tragedy.
Olivia Caldwell has always love butterflies. So it's no wonder, then, that she would become one herself.