KINGSTON – A few years ago, Jenny and Greg Thornton of Kingston had never heard of Kawasaki disease.
Then, in February 2017, their 6-month-old son, Levi, was diagnosed with it.
“Before his diagnosis, we had never heard of Kawasaki disease before,” Levi’s mom, Jenny, said. “Now it’s a daily part of our lives. Looking at Levi, you’d never know he has the disease. He takes a ninja class at Energym, he loves to climb and run around. He just takes an aspirin every morning for his heart.”
What is Kawasaki disease?
KD is an illness characterized by inflammation of blood vessels throughout the body that can cause lasting damage to coronary arteries and the heart muscle.
According to the Kawasaki Disease Foundation, common symptoms of the disease are bloodshot eyes; rash; strawberry tongue; red, cracked lips; swollen lymph node in neck; red palms and soles; and swollen hands and feet.
The disease’s cause is unknown, but theories include bacteria, viruses or other environmental factors. Certain genes may make children more likely to get KD. The disease primarily affects children.
A new syndrome, pediatric multisymptom inflammatory syndrome, believed to be related to the novel coronavirus, has begun developing in school-aged children and teenagers. The symptoms of this new syndrome have some similarities to Kawasaki disease, including that it attacks the heart and can cause a rash or red eyes.
Levi Thornton had KD symptoms for 11 days, and doctors initially thought he had pink eye or an ear infection. One of the most common KD symptoms is a strawberry tongue, which he did not have, which made diagnosing difficult.
Levi was admitted to the hospital in Rockford and transferred to Lurie Children’s Hospital in Chicago.
“After the constant support and treatment of Lurie's facility and staff, Levi eventually recovered and is doing much better than we originally thought he would,” the Thorntons wrote in response to an email from Lurie Children’s Hospital. “We are so fortunate that Lurie’s has the Center for Kawasaki Disease with the best team of doctors, nurses and researchers.”
“We’re just very fortunate Levi’s story has a happy ending,” Greg Thornton said. “At one point, his symptoms were so severe, we didn’t know if he was going to make it. He still has KD. He will always require yearly cardiology appointments and a low-dose aspirin every day. There is a treatment for KD. If it is caught before 10 days, the treatment is highly effective. It’s why raising awareness and telling others about KD is so important.”
Raising funds and awareness
To give back to Lurie Children’s Hospital, which they credit with saving their son’s life, and to raise awareness for KD, the Thornton family is participating in the 16th annual Move for Kids Event. This will be the family's third year participating.
The Move for Kids Event is presented by Hub Group and benefits Lurie Children’s Hospital. Every dollar raised will benefit the hospital’s COVID-19 Support Fund, ensuring that children have access to health care.
The annual walk/run usually is in downtown Chicago at Soldier Field, but has been moved to a virtual event because of COVID-19. The virtual event will include a fitness challenge, Move Where You Are challenge and virtual movie night. Participants are encouraged to share photos on social media, tagging Lurie Children’s (@LurieChildrens) and include the event-specific hashtags #Move4Kids and #All4Your1.
Registration for the event is free, but participants are encouraged to raise funds. Adult participants who raise $100 or more and kids younger than 17 who raise $50 or more will receive a Move for Kids T-shirt. Online registration closes Saturday, May 16.
“This year’s Move for Kids, presented by Hub Group, will look and feel different than usual, but the spirit is the same – giving our community a way to come together in support of our patients, families and caregivers,” Move for Kids Event coordinator, Jessica Brooks said. “We are so inspired by everyone who is fundraising for Lurie Children’s right now, at a time when it’s needed more than ever. We are honored to have patient families, corporate partners, employees and volunteers rallying together in support of our health care heroes, and we look forward to celebrating together – while apart – on May 17.”
For information about Move for Kids or to register and make donations, visit the event’s website, https://www.luriechildrens.org/en/events/move-for-kids2/.
To join or donate to the Thornton’s team, Team Levi for KD Awareness, follow this link, http://foundation.luriechildrens.org/site/TR?px=1959732&fr_id=1950&pg=personal.