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Wednesday, May 15th, 2013

Rare illness delivers life lessons to families

By Shelley Grieshop
COLDWATER - Carter Kanney sits cross-legged on the floor watching a Disney flick as he clenches a small toy car in his hand.
His actions, spirit and frequent giggles resemble most 3-year-olds but his life is much more complicated. A year ago, his parents learned he has mucopolysaccharidosis (MPS) II or Hunter syndrome, a rare genetic disorder with no known cure.
"Right now Carter is Carter and we're just enjoying him day by day," his father, Dan Kanney, said.
Natalie Kanney, the little boy's mother, shook her head in agreement.
"We look at this as more of a gift," she said, adding Carter's illness has given the couple a new perspective on life. "We all take so much for granted."
Hunter syndrome is one of 13 types of MPS that fall in seven different categories. Only about 350 people in the U.S. have it. The illness occurs when an enzyme the body needs is either missing or doesn't work properly. The absence causes certain complex molecules to build up in harmful amounts in cells and tissues, and eventually cause damage that affects appearance, mental development, organ function and physical abilities.
Symptoms of Hunter syndrome can be mild or severe and can include delayed development, respiratory and hearing difficulties, cardiovascular problems, stunted growth and others. Victims of the disease often develop distinct facial features such as thickened lips, tongue and nostrils.
The disorder nearly always occurs in males and often first appears in children as young as 18 months. Carter's case is extremely rare; males almost always inherit the illness from their mother but Natalie Kanney, who is expecting the couple's third child in late August, is not a carrier.
The only treatment currently available to Carter is enzyme replacement therapy. He undergoes 3-hour Elaprase infusions weekly, his parents said.
At a graduation party one year ago, a woman commented that Carter resembled her son who had died at age 3 from a form of MPS. The Kanneys decided to have Carter examined by their pediatrician.
"It's so rare ... she told us it's something you just don't see," said Dan Kanney, who teaches high school science at New Bremen schools.
Carter was sent onto Dayton and Cincinnati Children's hospitals and is now a patient of a physician in Chapel Hill, N.C., a worldwide expert on Hunter syndrome.
Carter's grandfather, Jerry Kanney, often keeps the brown-eyed boy busy during the nursing-supervised infusions at the parents' Coldwater home. The retired school administrator has became active in the national MPS organization.
"I kept thinking there's got to be more I can do," he said.
Jerry Kanney volunteers on the organization's fundraising committee. Recently he was asked to review scholarship applications from youths with MPS. He recalls one young man amazingly calling his illness a "blessing" because of the lessons he's learned along the way.
"That really gave me hope ... and that's what we want for Carter," he said.
Carter's prognosis is unknown; unless a cure is found, he likely will undergo enzyme infusions for the rest of his life, his parents said.
"We tell people we just follow Carter's path," said Natalie Kanney, a guidance counselor at Coldwater schools.
The Kanneys want to educate people about MPS and support public awareness for all children with special needs.
Unfortunately, Carter is one of several area youths afflicted with MPS. Two-year-old Adriane Schmackers of St. Henry was diagnosed last July with MPS IIIA. The little girl uses hearing aids and sign language and will start preschool in the fall, according to her parents, Lori and Chris Schmackers.
"Adriane is one of the orneriest, fearless and stubborn kids you would ever meet," her mother said.
The family appreciates all the thoughts and prayers they've received and cherish their little girl every day, Lori Schmackers said.
"Our little 'Sweet Pea' will be 3 on Saturday and we love her very much and want to keep her as long as we can," she added.
Eight-year-old Ava Kremer of Fort Recovery has the same type of MPS as Adriane, a distant relative. It was a rough winter for their child, her parents said.
"She's lost all mobility and the ability to swallow," Nikki Kremer said.
Seizure activity has increased. Infusions aren't effective; Ava now receives natural supplements and chiropractic care, her mother said.  
The Kremers, also national MPS members, hope promising research overseas will result in a cure for their child and others.
Nikki Kremer for several years has held an annual public celebration in Fort Recovery to promote MPS awareness and tons of fun.
"It's a day for kids to play and celebrate being a child," she said.

MPS fundraisers:
What: Purple lemonade stand
When: 11 a.m.-1 p.m. Saturday
Where: Boundry Street across from Monument Park, Fort Recovery.
Drinks, sandwiches, cupcakes and cookies will be available for purchase. Donations will be accepted.
The public also can donate to the National MPS Society to help find a cure. Go to www.mpssociety.org and click on fundraising.
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