By Michelle L. Cramer
Founder & Executive Director of OAW
Ellie’s paired photographer for 9 years
Ellie: May 29, 2014 – January 22, 2025
When we planned to feature Ellie in our 2025 calendar for June – Lung Disease Awareness Month – she was still here and thriving. None of us could have predicted that she would be gone by this time. This was intended to be an update, since the family shared her story in video form back in 2020. Instead, it’s sharing her story from our side, looking in.
Related: Read/Watch Ellie’s Story from 2020
Our organization has walked beside the Bowman family since Ellie was a year old—one of our very first recipients—providing pictures at least annually, and support in any way we could throughout their journey.
Ellie was born with a rare condition known as DiGeorge Syndrome, or 22q11.2 deletion (Q22 deletion). This is a chromosomal disorder that can cause a wide range of health problems, including heart defects, immune system dysfunction, developmental delays, and feeding difficulties. In Ellie’s case, it led to the need for a heart and double lung transplant by the time she was just four years old.
The first time I met Ellie was at one of our early recipient picnics in Springfield. I remember sitting across a picnic table from Kali, with Ellie between us on the tabletop, getting to know each other. Not long after, I became their paired photographer. Our first session together was on a very hot summer day—everyone was uncomfortably sweating except Ellie, who was full of her signature sassy facial expressions the entire time.
Getting such an intimate, inside look at Ellie’s life was an immense privilege. I remember doing Christmas pictures when she was about three years old. Her health was declining, and it could have very well been their last Christmas with her. Being invited into their home to witness the whole family love on her, play with her, dance with her—that was such an honor. I was a fly on the wall in one of the most beautiful expressions of love I’ve ever seen.
That summer, Ellie was admitted to the hospital in St. Louis. I got a call from Kali—the doctors didn’t think Ellie had long, and she asked if I could get a photographer to the hospital that night. I had grown so attached to the family that I was sobbing as I frantically called our St. Louis volunteers. Thankfully, we were able to get someone there.
And then, the next day, the call came: Ellie got a heart and lungs. That news changed everything. We supported the Bowmans from afar while Ellie underwent recovery after this miraculous and life-saving surgery.
One of my favorite sessions ever was just a couple of weeks after Ellie came home from the hospital. I spent two hours with them, just capturing the three of them being together. I even have videos—Ellie playing doctor with her Minnie Mouse doll, dancing like no one was watching, and the three of them singing and playing instruments together. That day, Ellie wasn’t just used to me being around—she knew me. And that meant everything.
Another moment I’ll never forget was the first time she ever got to play at the park with friends—her trach had been removed and she JUMPED. Something she’d never really been able to do before. We all cried, watching her have such grand fun.
And then there was the time we did pictures in her great-grandmother’s backyard, one of her favorite places in the world. At first, Ellie wasn’t having it. She knew she’d get to swim eventually and couldn’t understand why we were delaying that. She needed more bandaids—her emotional weather gauge. But eventually, she started jumping and dancing. And once she was in the pool, the pure joy on her face brought me to tears all over again.
Everything about Ellie was special, and I was so privileged to have a role in telling her story. But more than that, I got to know her. I got to witness the language she and her parents shared that no one else could speak. I was present for some of the most raw, intimate moments—where all their love was laid bare as they held her and kissed her again and again, knowing each time might be the last.
There are hundreds of people who followed Ellie’s journey from afar and found inspiration in her story. I had the honor of witnessing her life up close for nearly a decade. Her impact runs deeper than inspiration—she and her family helped shape how we support every family we serve. She held a part of my heart that will always be hers, and her influence will ripple through the work we do for years to come.
I hope you’re dancing and swimming for eternity now, sweet girl. You are deeply missed.
