Week 12 Kid Captain Veronica Sullivan still overcoming adversity
The 7-year-old from Marion, Iowa, still visits medical specialists and therapists frequently as she fights the effects of transverse myelitis and KBG Syndrome.
November 17, 2022
Veronica Sullivan’s favorite part of Kinnick Stadium is its pink visitors’ locker room. Iowa football’s Week 12 Kid Captain got a chance to see the pink walls and plumbing fixtures during Kids Day at Kinnick on Aug. 13.
Former Iowa head coach Hayden Fry had the walls painted pink in 1979 to try to gain a pregame mental advantage over his opponents.
When current Iowa head coach Kirk Ferentz visited with the Sullivan family at Kinnick four months ago, Veronica’s sister, Genevieve, suggested the Hawkeyes put pink paper towels and toilet paper in the away locker room.
“To see that time that they were willing to put into recognizing these youngsters, making them feel special, making the families feel special, it’s awesome,” Veronica’s father, Dave Sullivan, said. “Genevieve wanted to tell coach Ferentz that she thought they should get pink paper towels and pink toilet paper for the locker rooms … He took the time to stop and listen to her and say, ‘You know what, that’s not a bad idea. Maybe we oughta work on that.’”
A facility tour and chat with Ferentz wasn’t the only highlight of Kids’ Day for Veronica and her family. She also had a chance to swarm out of the Hawkeyes’ home tunnel alongside defensive end Joe Evans.
Six years ago, Veronica’s parents didn’t know if she’d ever get a chance to experience life like other grade schoolers do — much less have a chance to trot onto Duke Slater Field.
On Sept. 9, 2016, Veronica’s mother, Barb Sullivan, sensed something was bothering her then-16-month-old daughter. Veronica ran into Barb’s arms crying when she was picked up from daycare, prompting a visit to a local urgent care clinic.
Veronica was then given an antibiotic injection to combat a double ear infection. At the time, Veronica dealt with ear infections frequently.
Clinicians sent her home after the injection and mandated a follow-up visit. The next morning, Barb and Veronica returned to the clinic as requested. An examination indicated Veronica’s ear infection had cleared up.
Hours after Veronica returned home from the clinic, things took a turn for the worse. She became lethargic and unresponsive around noon. Her parents took her to an emergency room near their home in Marion, Iowa, soon after.
Veronica didn’t flinch while she underwent a number of tests — including a spinal tap — in the emergency room. When Veronica’s tests came back with inconclusive results, clinicians recommended she be transferred to the University of Iowa Hospitals and Clinics.
Around 4 p.m. on Sept. 10, 2016, Barb said, Veronica was shuttled to Iowa City via ambulance. Doctors from multiple disciplines took Veronica’s case when she arrived at UIHC.
Veronica underwent more testing at UIHC and stayed in the Pediatric Intensive Care Unit for approximately a week while doctors collaborated with medical experts across the U.S. to make a diagnosis.
Veronica’s physicians diagnosed her with transverse myelitis after they discovered a lesion along her spinal cord.
“Basically, they said it’s an autoimmune disorder where her body thought her spinal cord was an infection,” Barb said of the transverse myelitis diagnosis. “So, her body was slowly but surely trying to kill off her spinal cord. So, that’s why she was losing all of her faculties and things like that.”
Veronica stayed at UIHC for about a month and was treated using a type of antibody called immunoglobulins.
When she finally returned home, her parents had to learn how to care for her like the medical team at the hospital had. So, Barb and Dave began to figure out how to place Veronica’s feeding tube and execute some of the therapies her doctors had prescribed.
“At that point, we weren’t sure what damage was done and what we were gonna be left with,” Barb said. “They said it’s kind of a 30 percent chance she would have nothing back — that she would stay as she was — a 30 percent chance that she would have some of her mobility and things like that back, and a 30 percent chance that she would be as close to normal as possible. Thank God we ended up on the top half of that.”
Veronica was on a feeding tube for almost seven months. During that time, she started to undergo genetic testing.
She was almost two years old when the evaluations started. She was about four years old by the time her test results were finalized in 2018. Genetic examination revealed that Veronica had KBG Syndrome, and the ailment was the source of her epilepsy, vision problems, and short stature.
Veronica was also diagnosed with Vascular Ehlers-Danlos Syndrome — a disorder that can compromise the structure of veins, arteries, and organs.
“On a base level, she’s more prone to things like bruising, fairer skin, thinner skin,” Barb said. “On a much more serious level, she’s also more prone to things like spontaneous dissection of arteries, organs, things like that.
“So, no contact sports. Kinda has to be followed by a specialist for that for the rest of her life. But on a day-to-day basis, it doesn’t seem to affect her too much.”
Now 7 years old, Veronica still makes frequent visits to UIHC to have her hearing and vision evaluated. According to UIHC’s website, Veronica suffers from bilateral hearing loss and has undergone eye surgery.
Barb said that, while the Iowa-Minnesota kid captain is still playing a little catch-up in the classroom and participating in speech therapy, she can now lead a normal life like her peers.
“I think she’s a pretty typical second-grader,” Barb said. “She likes to play with friends, swim, dance, and play on her iPad.”