Forever 24 · January 23, 2001 – February 25, 2025
Daughter · Sister · Performer · Force of Nature
"She was magic." — her dad, Chris
Who She Was
Emily Louise Kouzios walked into every room the same way she walked onto every stage — with a presence so distinct, so alive, that you knew immediately something special was happening. She made everyone just a little bit cooler. She was the one who decided you were all going somewhere for coffee. The one who turned a Tuesday into a memory.
She was sassy and hilarious and completely, unapologetically herself. Quirky in the very best way — the kind of person who trained Bruno, her pitbull, to snuggle. She fostered cats, rescued (aka proplifted) plants, sang opera at the Lyric Opera of Chicago, protested injustice in Crystal Lake, worked four jobs, made the Dean's List, and somehow had energy left over to make sure everyone around her was doing something worthwhile with their time too.
In her first semester at Millikin University she placed in the top ten performers in her class, became Vice President of the Animal Rights Club, sang in the top choral ensemble. She posted about it with the casual confidence of someone who didn't realize she was extraordinary. "Just my semesterly school update!"
When cancer arrived during her senior year of college — on the same day as first semester finals with a performance tour she had spent her whole year college career working toward — her first words coming out of brain surgery were not what happened to me. They were about finals. And the tour. And she demanded to go on tour even though she was still intubated. When we told her that was not possible, she was just not having it.
Emily did not go on that tour but when it passed through Chicago we met up with the tour so she could hug her friends. So she went back to school at the start of second semester. Determined. She finished college. Performed her senior recital. Graduated. Moved in with her partner Jacob and they raised Bruno. Joined the Springfield Choral Society. Sang trios at First Presbyterian. Became an educator at a special needs school. And she sang until her body wouldn't let her anymore. In her final act of courage, she donated her body to Northwestern's Feinberg School of Medicine so that the next Emily might live.
In Her Own Words
On her cancer anniversary
"Nothing can prepare you for being told you have cancer at 21 years old with 6 months of undergrad to finish and a whole life to figure out. Everything about my cancer journey has been unusual, and this year has been a whirlwind."
On her first semester at Millikin
"Worked my hardest to get straight A's... had a great experience, and I'm ready for the next challenges!!"
On privilege and using your voice
"...use your privilege to do good for those with less privilege."
On treatment and what comes next
"Humor beats cancer"
The Quiet, Devastating Moments
There is a video of Emily that most people have never seen.
She is sitting in her room. Her face is swollen. You can tell she has been crying -- the kind of crying that takes everything out of you. Her cancer medication was supposed to be delivered that day. The drugs her body needed, on a schedule her body could not negotiate with. The tracking said delivery attempted. But Emily was home. She was right there.
She couldn't chase the driver. She couldn't go get it herself. She just had to sit in her room and be scared.
That is what cancer actually looks like on an ordinary Tuesday. Not the brave face. Not the graduation photo. Not the mountain she hiked or the stage she owned. Just a young woman alone in her room, face swollen from crying, waiting for medicine that didn't come, while a system that was supposed to help her shrugged and moved on.
The fear that lives in your brain when your brain is broken is not dramatic. It does not announce itself. It sits with you in your room on a random afternoon and it is relentless and it is exhausting and it is real.
If you are in that room today -- scared, failed by something small, holding yourself together with nothing left -- Emily was there too. You are not alone in the quiet, devastating moments. They count just as much as the brave ones.
The Performer
Before opera, there was just Emily -- and a stage, and an audience, and the absolute certainty that this is where she belonged. From the time she was in elementary school she was performing in concerts, musicals, and choral groups too numerous to count. She did not ease into performing. She arrived. Bold, daring, and completely natural -- the kind of performer who makes everyone around her better simply by being in the same production.
She lit up every stage she ever stood on. Not because she was trying to. Because she could not help it. She was born with a personality that was outgoing, magnetic, and completely natural on a stage. But Emily was also the one who did the work. Every single day. She trained her voice relentlessly, pushed herself to be better, showed up prepared, and never stopped improving. The presence you saw from the audience was born of both -- a gift she was given and a discipline she chose. Directors noticed. Audiences felt it. The performers who shared the stage with her loved every moment of it. She had a way of making everyone around her better, braver, and more alive up there.
Opera found her eventually because opera demands everything -- every breath, every nerve, every ounce of training and courage and raw human emotion -- and Emily had all of it to give. She was classically trained at Millikin University, where she earned a Bachelor's in Music with a Vocal Performance emphasis in Opera. She placed in the top ten performers her very first semester. She competed at the Central Region NATS auditions and qualified for semifinals. She performed Handel's Messiah and Bach's Magnificat. She sang in Millikin's University Choir -- the top choral ensemble on campus.
After graduating college -- while still undergoing cancer treatment -- she kept performing. She sang trios at the First Presbyterian Church of Springfield. She performed with the Springfield Choral Society. She kept showing up after her first surgery, after her second, after her third. But Emily never needed a stage to sing. She sang in the car. In the shower. Doing dishes. Standing in line. Everywhere, all the time, because music was not something she did -- it was something she was. She sang until her body would not let her anymore.
Her voice was a gift she gave freely, to everyone, right up until the very end.
Plan C(ure)
Emily lived with a highly aggressive, one-of-a-kind brain tumor for 26 months. A pediatric type tumor that mutated into an extremely aggressive novel subtype — one so rare, so uniquely mutated, that science is still working to understand it.
She underwent four brain surgeries. Thirty radiation treatments. A major stroke. She learned to feed herself again. She did occupational and physical therapy until there was nothing left to do. And in every single moment in between, she kept living — fully, loudly, on her own terms.
On January 23, 2025 — her 24th birthday — Jacob took her to the ER at Springfield Memorial Hospital. The tumor had grown back so aggressively there was no time to transport her to Chicago. They operated immediately. She had a major stroke during surgery. The weeks that followed were spent fighting through occupational and physical therapy to come back — because that is what Emily did. She fought. You all fought.
On February 9th, after waiting two days for an ambulance to coordinate transport, her family made a decision. The system could not work it out. So they signed her out — against medical advice — put her in a car, and drove her to Northwestern in Chicago themselves. Because waiting was no longer an option. Because they were not going to let a coordination failure write the end of her story.
The day after they arrived, Northwestern completed their workup. The scans told a story no one wanted to read. The cancer had spread too far. There were no more options. No more treatment. It was time for hospice.
On February 13th they left Northwestern in an ambulance and arrived at AccentCare in Naperville. Emily had been moved so many times. Her family begged them to let her stay until the end. The system — even in its kindest form — expects a plan. A next step. A place to go after comfort care. They said they would do anything. They just could not move her again.
They let them stay.
She lived another twelve days. In all, she spent fifteen days with the knowledge that she was going to die. She lived those days with grace. Surrounded by the people who loved her most. Her father read to her. The world got very small and very quiet and very full of love.
On February 25, 2025 at 6:28 PM, Emily Louise Kouzios took her last breath. Forever 24.
In her final act of generosity, Emily donated her body to Northwestern University's Feinberg School of Medicine — specifically the Malnati Brain Tumor Institute — so that researchers could study her tumor and learn what made it the monster it was. So that the next family might have a different story.
Her father Chris has continued the fight through his own genomic research platform, building AI models to analyze her tumor at the genetic level — because he promised her two things: she would not suffer, and the research would continue. Progress on Purpose exists to carry Emily's mission forward. We fundraise, we advocate, and we support the families walking the road we walked.
Continue Emily's Mission
It changed form. And we are not done. Support the organizations she believed in, or find resources for your own journey.
Forever 24 · Forever in our hearts
Progress on Purpose was created in her honor. Her story did not end on February 25. It changed form. And we are not done.
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