Merrimack’s Danny Lavigne, a boy with Kawasaki disease, visited by motorcyclists
errimack’s Danny Lavigne, a student in kindergarten at Thorntons Ferry School, was told only that someone on a motorcycle might come for a visit to say hello after he had been very ill.
The truth was more extravagant. A rolling cavalcade of more than a dozen motorcyclists paid a visit to Danny’s home, to cheer him up as he contends with Kawasaki disease. The rare condition, involving inflammation of the blood vessels and many of the body’s tissues, can be life-threatening.
Danny, an avid collector of toy motorcycles, jokingly calls Kawasaki disease by a different name – dirt bike disease. Nevertheless, it was Harley-Davidson motorcycles and a contingent of well wishers that arrived at his Merrimack home on Saturday, May 31.
The riders were from the Manchester Motorcycle Club, a group whose road captain, Steve Vachon, arranged the visit. Vachon heard from his sister, Louise Letourneau, a teacher at Thornton’s Ferry School, about Danny’s illness. Letourneau and another kindergarten teacher, Barbara Burns, often took homework, notes from classmates and small gifts to Danny when he was too ill to attend school.
Danny, 6, and his brother, Owen Rondeau, 8, were all smiles as the riders parked their bikes. Another brother, Kyle Rondeau, 10, was elsewhere playing baseball. The brothers’ stepmom, Lindsey Burns, Danny’s stepdad, Scott Rondeau, and other family members documented the event on video.
Lindsey said Kawasaki disease is rare. She said she was thankful that the boy’s pediatrician knew about it. A high fever and red, cracked lips initially indicated the illness was more than just a routine bug, she said.
“Danny was eating fine, and sleeping fine, but had a high temperature,” Lindsey said. “We went to the doctor and, while we literally were in the pediatrician’s office, Danny got a rash on his body. His eyes were very red, too.”
Other symptoms range from a scratchy feeling on the tongue and the development of red bumps on the tongue. The condition is known as strawberry tongue. An elevated heart rate is another sign. Blood thinners are prescribed. A heart-rate monitor becomes an accessory to a family’s medical kit.
“It’s different with every kid,” Lindsey said. “Danny was out of school for about five months. He’s getting better, day by day. He plays baseball and wears a special hat to protect his head. There are days when he’s running around like crazy.”
Danny, whose grandfather, Kevin Burns, owns a 2010 Harley Ultra Classic, and Danny’s grandmother, Mary Burns, former owner of a Honda Rebel, were among the spectators watching as the motorcyclists rode up the street. The couple lives nearby in Merrimack.
“He’s the strongest little kid I’ve ever met,” Kevin said. “Nothing phases him.”
Danny’s collection of more than two dozen toy motorcycles – choppers and dirt bikes and Harleys – indicates his favorite mode of transport.
The bikers gave him gifts ranging from a leather vest, a biker bandanna, a patch embroidered with the club name, Manchester Motorcycle Club, sets of Hot Wheels racing cars, a Harley wallet and other souvenirs.
Club member Ron “Redneck” Marcoux, a gifted woodworker, made Danny a toy top that spins and member Diane Goulet allowed Danny and Owen to climb aboard her three-wheeler, a Harley-Davidson Sportster trike painted an electric blue. The boys set a spell in the saddle. The wind ruffled their hair.
Lindsey Burns, a nurse for Home, Health and Hospice Care, based in Merrimack, said the family is thankful for Danny’s progress and for the support shown by her employer, an enterprise that gave her ample time to go with Danny to seemingly endless doctor visits.
She also thanked neighbors and friends for their gifts of home-cooked meals, gas cards to help with travel expenses to Boston Children’s Hospital and to Dartmouth-
Hitchcock, where Danny’s pediatrician is based.
“I’m a nurse and I didn’t have a clue as to what my son was experiencing, right in front of me,” Lindsey said. “A week later, we’re in the ICU. The more people learn about KD (Kawasaki disease), the less fatal it will become. More research, more awareness, more education – that’s what we need.”
According to the Boston Children’s Hospital website, childrenshospital.org, Kawasaki disease can cause inflammation of many of the body’s tissues – hands, feet, mouth, lips and throat, along with the whites of the eyes. It notes the potential for complications relating to the heart to be temporary, or longer lasting. The cause of Kawasaki disease is unknown. Early diagnosis is urgent for successful treatment.
Lindsey said that Danny has not ceased talking about the visit from the bikers. He recently made the Merrimack Youth Association’s all-star team in baseball and immediately wanted his mom to email photos to the Manchester Motorcycle Club, so the members who visited him could share his good news.
“Danny has not stopped talking about the day the motorcycles came,” Lindsey said. “He had show-and-tell about it at his school and he brought the patch they gave him to show everyone.”
Danny Lavigne, 6, was succinct in his review of the bikers’ visit.
“It was really cool,” Danny said. “Really, really cool.”
For more information on Kawasaki disease, check online: www.childrenshospital.org.