A Mom’s Eternal Thanks: Riley Doctor Caught Daughter’s Rare, ‘Catastrophic’ Disease
Lexi Smith was a toddler when she was diagnosed with Kawasaki Disease. She’s 15 now and a standout soccer player.
Erin Tofani came home from her night shift as a nurse to find her toddler daughter Lexi with a fever and a rash. Her daughter couldn’t get comfortable to sleep. She was restless.
Tofani wasn’t overly concerned. She assumed it was a common virus. Maybe roseola.
She gave Lexi medicine to bring down the fever and it worked -- for a couple of days. But by day three, the medicine stopped working. Lexi’s fever spiked to 104, then 105.
“No matter what I gave her, it wouldn’t come down,” says Tofani, of Fishers, now a nurse practitioner. “That’s when I really got scared.”
Tofani took Lexi to IU Health pediatrician Patrick E. Kelley’s office.
“We were in the waiting room and it was full and it was busting at the seams,” Tofani says. “Dr. Kelley walked by and saw Lexi and had us come straight back to the room.”
Dr. Kelley recognized Lexi’s symptoms. Peeling skin, cracked lips, red eyes, fever and a rash.
He diagnosed her with Kawasaki Disease and told Tofani to take Lexi to Riley Hospital for Children at IU Health, immediately.
“It is just so scary,” says Tofani, who has three other children, “because if you don’t catch this disease in time, the results can be catastrophic.”
Kawasaki Disease is an extremely rare childhood illness that affects the blood vessels, an autoimmune disease that results in inflammation of those vessels.
If not treated within 10 days, there is a high risk of coronary artery aneurysm. In severe cases, the disease can require open-heart surgery. If not caught in time, some children with Kawasaki Disease die.
At Riley, back in 2005, Lexi was admitted and saw a team of doctors. Her condition was so rare that the physicians were calling groups of residents in to see Lexi.
She was treated with an IV of immunoglobulin, a pool of antibodies from donated blood. Within hours of the first treatment, Tofani saw her daughter come back to life. She saw the old Lexi.
Until the day of the diagnosis, Tofani had never heard of Kawasaki disease, even as a nurse. Most people haven’t and that can lead to children being misdiagnosed.
Thankfully, Lexi wasn’t misdiagnosed and Tofani says that is all due to Dr. Kelley.
“I’ve always wanted to find some way to tell Dr. Kelley how much I appreciate what he did and just how grateful we are for him,” Tofani says. “This could have turned out to be catastrophic to us. He is the reason why it was caught so early.”
Lexi is 15 years old now and a standout soccer player at Hamilton Southeastern High School. She plays forward wing, sometimes center, sometimes defense. When she’s not playing school soccer, she plays for a club team.
Lexi loves animals, has a kind heart and likes to babysit. She has no long-term effects from Kawasaki Disease.
In fact, Lexi doesn’t remember much about that scary time 12 years ago, except for the party. She turned 3 while she was at Riley and the doctors and nurses threw a birthday party for her.
Tofani remembers crying every day inside Riley, hoping for her daughter’s recovery.
She wants to tell her story and thank Dr. Kelley to help raise awareness of Kawasaki Disease and its symptoms, to point out the importance of physicians being trained to diagnose the disease.
After all, early and quick diagnosis is key. That is what saved Lexi’s life.
“Our experience with it is exceptional. It’s almost unheard of to be diagnosed on day 4,” Tofani says. “And we are just so grateful. We will forever be grateful for that.”