Brody Finnegan

Brody Finnegan, a bright‑eyed little boy from Ballwin with an infectious smile and a love for Cheetos and Gummy Skittles, has grown up surrounded by care, courage, and community. The hospital feels like an extension of home for him and his parents, Katie and Allan. Their doctors, nurses, therapists, and caregivers are his friends. During a recent visit, he smiled sweetly, pointed toward the hallway, cheerfully suggesting to his visitors he was boss of the room by saying, “Out the door, Dinosaur!” when it was time for his nap.

Katie’s pregnancy had been perfect, and Brody arrived full‑term in August 2022. Within weeks of his birth, however, he developed a severe facial rash that led to his first hospitalization. Believed to be a staph infection, he was treated with antibiotics and sent home, but the rash never fully resolved. About a year later, in 2023, he underwent a series of skin biopsies, and in early 2024, Brody underwent comprehensive genetic testing in hopes of uncovering the cause of his ongoing symptoms.

Despite the persistent rash, Brody seemed to thrive until May 2024, when at just 21 months old, he became unusually tired and lethargic. After being diagnosed with strep and starting antibiotics, his entire body swelled over the course of a couple days. Concerned about his kidneys, his pediatrician sent him to the Emergency Department at SSM Health Cardinal Glennon Children’s Hospital. A chest X‑ray revealed massive cardiomegaly—his heart was dangerously enlarged.

Brody was admitted to the PICU, where an echocardiogram showed heart failure and a large pericardial effusion. A cardiac catheterization confirmed he had restrictive cardiomyopathy. Cardiologist, Dr. Bob Petersen, gently delivered the devastating news to Katie and Allan: “Brody will need a heart transplant.”

Around this time, long‑awaited genetic results arrived. They identified a FAM111B mutation—an extraordinarily rare condition with only about 40 known cases worldwide. The mutation can cause skin abnormalities, like those Brody first exhibited shortly after he was born. While there is no direct link known to cardiomyopathy specifically, other muscle conditions have been associated, leaving room for a possible connection. Neither Katie nor Allan carries the mutation; Brody’s case appears to be a spontaneous de novo occurrence.

Brody’s first hospital stay that May lasted 10 days, after which he went home on a regimen of heart medications and was enrolled in the STARS (Special Needs Tracking and Awareness Response) program. “Our district’s first responders came out to the house to meet Brody soon after we got discharged. It was comforting,” Katie said. “We knew help was there if we ever needed it.” After some more bloodwork and diagnostic tests, Brody was officially listed for a heart transplant on September 6, 2024.

For more than a year, Brody remained home, attending regular cardiology visits and scheduled catheterizations while working regularly with physical therapy to combat swelling. Then, in August 2025, a routine catheterization showed worsening pressures. Concerns over these worsening pressures in addition to Brody not gaining any weight led to an admission in October 2025—to begin a continuous Milrinone infusion to support his stressed heart. Milrinone helps the heart pump better. It works by increasing the heart’s strength of contraction and relaxing blood vessels, allowing more blood to be pumped to the body. Milrinone is given intravenously and continuously in a hospital setting, so Brody settled into the TCU (Transitional Care Unit), listed as Status 1A, the highest priority on the national transplant list.

Hospital life has become part of Brody’s everyday routine. He has physical therapy with Graham, occupational therapy with Molly, preschool time with Katie, music therapy with Scott, and visits from Thor, the beloved Duo Dog. Holidays in the hospital brought unexpected joy, especially during “Light Up Glennon.” Families and supporters gathered outside with signs and flashlights, filling the night with warmth. “It was almost spiritual,” Katie recalled. “Brody doesn’t know any different—this is what holidays look like to him.”

Through uncertainty and long nights, trust has become the family’s anchor. “I can’t imagine being anywhere else,” Katie says. “We’re treated like partners in Brody’s care. Our team listens. They care deeply. It feels like family, and they treat us like they would their own.” She remembers the weight in Dr. Petersen’s voice when he told them Brody needed a transplant—how visibly it pained him. “I felt his heaviness as much as I felt my own. I just really believe his team here and those we have encountered on our journey to heart transplant over the last almost 2 years and that care for Brody every single day at Glennon are so incredibly special and it is just not something you find everywhere.  They came into our lives very unexpectedly and supported us from the moment we stepped into the ER that day and have continued to be there for us on every step of this journey. They have been there celebrating the good moments and little wins and have carried the weight of the tough moments with us as well and we feel that. Glennon is just a really special place with some really, really special people.”

Katie and Allan have found a community within the hospital—transplant families, nurses, doctors, and their transplant coordinator who answers texts day and night. Meanwhile, extended family and friends have twice rallied as Team Brody at Cardinal Glennon’s annual Sun Run 5K, raising awareness and support.

As Brody waits for the heart that will give him a new chapter, his parents’ dedication remains unwavering. Katie balances work and being with Brody as much as she can during the day. Allan arrives every night after work. “We haven’t had one night apart as a family since we were admitted,” Katie says. “We’re committed to staying together through all of this.”

Brody continues to charm everyone he meets—brave, joyful, and surrounded by a village of love—while the world waits alongside him for the gift of a new heart. Bring Cheetos if you visit, though, or you might just be “out the door, Dinosaur.”