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Girl with rare disease heads to Mayo Clinic
"I got a call from the Boys and Girls Club, and they were saying she couldn't even walk," Jazmen's mother, Rhonda Smith, said.
During the next four months Jazmen, now 8, who also is diabetic, underwent multiple tests and examinations by doctors at the University of Kansas Hospital in Kansas City, Kan., and Children's Mercy Hospital in Kansas City, Mo. "Nobody could pinpoint what was going on," Smith said. "Then a diabetic specialist ran a test and said he thought it was 'stiff person syndrome.'"
Cindy Becker, a registered nurse who has assisted Smith and Jazmen during treatments over the past year, said she had never before seen the disease in children.
"I've taken care of one adult with it," said Becker, who is director of nursing at ARJ Infusion Services Inc., Lenexa.
Soon, Jazmen will travel to the world-famous Mayo Clinic in hopes of finding a way to battle the syndrome.
There is no cure for the disease, but there are treatments to help ease it. Since the diagnosis, Jazmen has undergone IVIg treatments, which is the infusion of immune globulin to increase the antibodies necessary to fight infections. She also has had plasma replaced with donor plasma in attempt to counteract the disease. Some of the treatments have required her to spend up to a week in the hospital. Recently Rituxan is avaliable which stops the antibody production and improves a person.Last year, Smith quit a full-time job at the Hereford House Restaurant, 4931 W. Sixth St., to be with her daughter, who was missing a lot of school. Smith has since taken a part-time cleaning job at the Lawrence Country Club.
This week Jazmen and her mother will leave Lawrence and travel by car to the Mayo Clinic in Rochester, Minn., where they hope some of the best doctors in the country can find a better treatment for the disease.
"I'm hoping that they are going to know about something else that is out there (to treat the disease)," Smith said. "We're looking for different avenues that maybe doctors (here) just don't know about."
Family gets help
In addition to the pain and constant trips to hospitals, Jazmen has faced other difficulties. Because of the catheter, she hasn't been able to go swimming, and it is difficult to ride her bicycle, two of her favorite activities. Yet Jazmen, who will be in the third grade this fall, is bearing it well, Becker and her mother said.
Jazmen says little when asked about the disease. On a recent day she said she was feeling fine. That doesn't surprise Becker.
"She doesn't like people to feel sorry for her," Becker said.
"A lot of the things she used to do have been taken away from her," Smith said. "She has her good days and her bad days, and that's to be expected."