LOCKPORT – When Jeffrey and Caroline Lewanowski 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.
“Things build up in every cell of his body,” Caroline said. “He definitely has muscle stiffness and a couple of his toes are contracted.”
“He has a relatively mild form of the disease,” said Jeffrey, who teaches biology at Lockport High School. “We’re very lucky that he is on the really mild end of it. There are children who are extremely severe.”
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 eventually.
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. Caroline said that those with mild forms of MPS II can live long lives.
All this hasn’t prevented Michael from completing kindergarten on time at Royalton-Hartland Elementary School.
“I like reading, play time and snack time,” said Michael, who is sometimes called Mikey.
Gregg Murset said he has a friend in Phoenix whose child has MPS, and that’s how he was connected with the National MPS Society as one of five charitable organizations whose affiliates he and his family are helping out on a three-week national summer tour.
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.”
The Mursets came to Lockport from Detroit on their way to New York City. “I thought, ‘I’ve always wanted to take the family across the country. Let’s use some of our charities to connect us with some people and let’s do some jobs for them.’ It’s really fulfilling. We’ve met some amazing people with some very challenging stories.”
email: tprohaska@buffnews.com
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.
“Things build up in every cell of his body,” Caroline said. “He definitely has muscle stiffness and a couple of his toes are contracted.”
“He has a relatively mild form of the disease,” said Jeffrey, who teaches biology at Lockport High School. “We’re very lucky that he is on the really mild end of it. There are children who are extremely severe.”
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 eventually.
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. Caroline said that those with mild forms of MPS II can live long lives.
All this hasn’t prevented Michael from completing kindergarten on time at Royalton-Hartland Elementary School.
“I like reading, play time and snack time,” said Michael, who is sometimes called Mikey.
Gregg Murset said he has a friend in Phoenix whose child has MPS, and that’s how he was connected with the National MPS Society as one of five charitable organizations whose affiliates he and his family are helping out on a three-week national summer tour.
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.”
The Mursets came to Lockport from Detroit on their way to New York City. “I thought, ‘I’ve always wanted to take the family across the country. Let’s use some of our charities to connect us with some people and let’s do some jobs for them.’ It’s really fulfilling. We’ve met some amazing people with some very challenging stories.”
email: tprohaska@buffnews.com