On Monday, Sept. 10, Steve Clough will cross two things off his bucket list. The first is to kayak the 32-mile round-trip length of Canandaigua Lake. The second is to give back to the hospital that helped diagnose a mystery illness that left his son ailing and physicians across the country contradicting one another with their diagnoses.
In 1998, 10-year-old Jon Clough began to feel ill at one of the worst possible times – right before his family went on vacation. But after two pediatricians diagnosed him with Coxsackie virus, a virus that causes mild flu-like symptoms that usually only lasts for a few days, the Cloughs decided to move ahead with their planned family vacation to Mount Rainier in Washington.
“Jon was violently sick throughout the long plane ride,” Steve said. “He had a fever, swollen glands, lips that were a bright cherry red, and his skin was unbearably itchy. He had a red rash on his palms and all over his body. He was just miserable.”
Over the course of their vacation, the Cloughs bounced from doctor to doctor and received multiple conflicting, minor diagnoses of minor skin rashes and fevers, like Gianotti Crosti Syndrome, and one serious diagnosis – Kawasaki Disease. In the meantime, Jon was getting worse.
The family’s frustration with a string of different diagnoses finally led them to Bradley Keller, M.D., then a University of Rochester Medical Center (URMC) pediatric cardiologist. Keller confirmed that Jon had Kawasaki Disease, the most serious of his numerous diagnoses. By this point, however, the disease had already run rampant long enough to injure Jon’s heart. Doctors at URMC ran a full mark-up of tests to monitor Jon’s heart to assess the damage. This proved beneficial for Jon, whose weakened heart led to two hospitalizations at what is now Golisano Children’s Hospital at URMC.
During these hospitalizations he received gamma globulin treatments to help boost his immune system. The boost was needed to fight off infections that had entered his heart, causing myocarditis, or abnormal swelling of the heart muscles. Left untreated, the myocarditis could have progressed to heart failure.
Today Jon, now 24 years old, has overcome his heart troubles and after serving with the United States Navy plans to attend RIT in the fall.
Kayak for Kids is Steve Clough’s way of giving back to Golisano Children’s Hospital for helping with his son’s heart. Steve will be setting out at 4 a.m. that morning and predicts the trip will last a total of 12 hours.
“I expect it to be very grueling, but it’s something that I’ve wanted to do for a long time – both for myself and to help give back to the hospital,” Steve said.