Just because your child dies doesn't mean you give up the fight against what killed him.
Kris Klenke of Edwardsville is a great example of that. Her son, Kraig, died in 2010 at the age of 18 from a mucopolysaccharidosis disorder (MPS), but she continues to work with the national group battling the rare disorder to try and find cures.
She said he has been on the board of directors of the National MPS Society since 2000 and now is chairwoman of the family support group.
She said she stayed home for years as a caregiver for Kraig and now has started working outside the home, even though she still dedicates many hours to the society.
MPS is a group of metabolic disorders that result in the absence or malfunctioning of enzymes that normally break down sugars. Instead the sugars build up as poisons in the systems of people with MPS and cause cellular damage. The disease is permanent and progressive, affecting appearance, physical abilities, organs, systems, functions and sometimes mental development.
"It's very rare," Klenke said. "That makes it hard to get funding sometimes."
She said the death of her son was tough but she wasn't about to give up his fight. That meant not giving up the organization that had been so much help to her.
"Kraig was severely affected," she said. "He had Type II, Hunter syndrome, and was developmentally delayed. As he got older, there was more damage and he was unable to walk or talk."
By the time Kraig reached age 14, he was able to have some enzyme replacement therapy once a week.
"It was IV treatment all day," Klenke said "It was right out of research. It wasn't perfect. He was one of the first to get it when the treatment was approved."
Last month, Klenke was one of a group of National MPS Society board members that visited Congress to draw attention to the plight of their children. She visited the offices of U.S. Rep John Shimkus, U.S. Sen. Dick Durbin and U.S. Sen. Mark Kirk.
Her task is difficult. With national funding drying up for medical and other research, rare diseases is not a field that every researcher wants to be in, she said.
"We have raised a few million (dollars) nationwide to fund some research but that is a drop in the bucket to what is needed," she said. "We talked to the legislators about getting help and they were receptive."
But she knows that there is a long distance between listening and being able to do something. Still, she is one of many throughout the country who will keep trying.
"It's a way to really celebrate our kids," she said.
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