Next week, one Fairport father will paddle up and down Canandaigua Lake to support the hospital that helped put his son on the path to recovery.
Steve Clough, 54, will depart early Monday morning from Kershaw Park, where he will finish the race about 12 hours later. He will be able to check off number five of the Finger Lakes he’s planning to kayak across, but this 32-mile trip will be his longest yet.
All proceeds from the event will go directly to Golisano Children’s Hospital, where he and his family once found themselves looking for help.
Hitting close to home
Steve remembers getting ready for summer vacation in Mount Rainier, Wash., when his 10-year-old son Jon began to feel ill. Their pediatrician told the parents that his symptoms pointed to Coxsackie virus, which is a mild sickness that’s typically over within 24 hours.
Relieved, the family boarded the airplane bound for Washington when Jon began throwing up and burning with a high fever. After landing, they took him to the nearest hospital for a diagnosis. The doctor said he had Kawasaki disease — a rare but serious disorder in some children that can cause inflammation of the blood vessels and lead to aneurysms or even a heart attack.
Clough remembers taking his son to see more doctors over the course of their vacation, but most simply told them to give him Benadryl. Unfortunately for them, it didn’t help.
“He would wake up at night and be scratching the palms of his hands and the bottoms of his feet, with bright red lips, swollen lymph nodes, a rash all over his body. He really felt lousy,” Clough said.
They tried giving him oatmeal baths, but Jon was still unable to sleep.
More than a second opinion
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.
They went back to their pediatrician at home, who referred them to pediatric cardiologist Bradley Keller, M.D., who worked at University of Rochester Medical Center (URMC).
After seeing photos of Jon’s symptoms, Keller was able to confirm that he had Kawasaki disease.
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 weakened heart. He continued to come for annual checkups each year.
Next week, one Fairport father will paddle up and down Canandaigua Lake to support the hospital that helped put his son on the path to recovery.
Steve Clough, 54, will depart early Monday morning from Kershaw Park, where he will finish the race about 12 hours later. He will be able to check off number five of the Finger Lakes he’s planning to kayak across, but this 32-mile trip will be his longest yet.
All proceeds from the event will go directly to Golisano Children’s Hospital, where he and his family once found themselves looking for help.
Hitting close to home
Steve remembers getting ready for summer vacation in Mount Rainier, Wash., when his 10-year-old son Jon began to feel ill. Their pediatrician told the parents that his symptoms pointed to Coxsackie virus, which is a mild sickness that’s typically over within 24 hours.
Relieved, the family boarded the airplane bound for Washington when Jon began throwing up and burning with a high fever. After landing, they took him to the nearest hospital for a diagnosis. The doctor said he had Kawasaki disease — a rare but serious disorder in some children that can cause inflammation of the blood vessels and lead to aneurysms or even a heart attack.
Clough remembers taking his son to see more doctors over the course of their vacation, but most simply told them to give him Benadryl. Unfortunately for them, it didn’t help.
“He would wake up at night and be scratching the palms of his hands and the bottoms of his feet, with bright red lips, swollen lymph nodes, a rash all over his body. He really felt lousy,” Clough said.
They tried giving him oatmeal baths, but Jon was still unable to sleep.
More than a second opinion
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.
They went back to their pediatrician at home, who referred them to pediatric cardiologist Bradley Keller, M.D., who worked at University of Rochester Medical Center (URMC).
After seeing photos of Jon’s symptoms, Keller was able to confirm that he had Kawasaki disease.
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 weakened heart. He continued to come for annual checkups each year.
Then, at the age of 15, he awoke in the middle of the night with crushing chest pain. He spent the next week at what is now Golisano Children’s Hospital at URMC, where he was diagnosed with myocarditis, or abnormal swelling of the heart muscles. The same thing happened again two years later.
During both hospitalizations, he received gamma globulin treatments to help boost his immune system to fight off infections that had entered his heart. Left untreated, the myocarditis could have led to heart failure.
Looking back
Today, Jon is 24 and has no symptoms of his childhood illness. After graduating from Fairport High School in 2006, he spent more than four years in the Navy. He is attending Rochester Institute of Technology this fall to study software engineering.
Although he says he doesn’t remember much about his sickness, he’s very proud of his dad for pushing himself to complete the trek across the lake.
“It’s nice he’s doing such an intense trip just to show his appreciation,” said Jon. “It’s no walk in the park.”
Without the doctors in Rochester, he knows that his life could’ve taken a turn for the worst.
“We have the luxury of having Golisano Children’s Hospital, and we’re blessed to have it here,” he said.
Steve said the experience taught him how to be an advocate for himself and his loved ones. He worked in the pharmaceutical sales industry for 21 years, which exposed him to many of the inner workings of the health care system.
“It’s a wonderful institution we have here, but it has its pitfalls just like any business or institution. You’ve got to be your own advocate,” he said. “If you don’t get what you want, you go look for it and find someone who can help you.”
Clough now works as a financial advisor with Angelo Planning Group. As he fights through the pain of paddling such a great distance, he hopes his own story will encourage others to appreciate the resources Golisano provides and support it in a practical way.
“I like to keep the community healthy economically, emotionally and physically,” he said. “I think we all have to work together because times are tough. ... The more we can get involved and help each other out by giving back can only help everybody out in the long run.”
