LOCKPORT – When Jeffrey and Caroline Lewandowski of Lockport found out what was wrong with their son Michael, the news put them on a merry-go-round of doctor visits and treatments that left some work around the house undone.
Luckily, a family from Arizona came to town Wednesday to help out.
Gregg Murset of Phoenix, his wife and six kids dusted, pulled weeds and enjoyed some hospitality as part of a national three-week tour meant to help out those whose situations leave them unable to do all the house and yard work they need.
Six-year-old Michael has mucopolysaccharidosis type 2, or MPS II for short. It’s a disease in which his body lacks the enzyme that breaks down complex sugar molecules, leading to a wide range of negative impacts.
His mother, Caroline, a speech pathologist at Medina Memorial Hospital, said Michael was born with a larger-than-normal head, but they didn’t think much of that at the time.
“Fortunately, he’s cognitively intact. A lot of the children with it are not,” Caroline said.
However, he was slow to begin crawling and from about age 2, his toes were clenched. Both are signs of MPS II, they later learned. He had a stiff neck, only turned his head to the right, and developed a flat spot on his head.
Not until September 2011, almost three years ago, did they learn what the problem was. A Hamburg pediatric rheumatologist, Dr. Joan Calkins, ordered the tests needed to nail down the diagnosis.
Other problems related to Michael’s condition include an umbilical hernia, frequent ear infections and, most troubling of all, leaky heart valves that may have to be replaced.
Every Thursday, Michael gets a three-hour intravenous infusion of medicine. He used to go to Women’s and Children’s Hospital for that, although for the past year, it’s been administered at home.
Annually, he is taken to Chapel Hill, N.C., for a checkup by a specialist in the field. All this hasn’t prevented Michael from completing kindergarten on time at Royalton-Hartland Elementary School.
Traveling in a recreational vehicle, the family is promoting “My Job Chart,” Murset’s business. It’s an online or smartphone app that keeps track of each family member’s upcoming activities.
“It teaches kids work ethic, responsibility, accountability and giving back,” Murset said. “We’re just practicing what we preach.”