Teen & Doctor Team Up To Fight Dystonia
Local research could benefit thousands of children suffering from two devastating diseases.
A Sanford doctor received a national grant to study dystonia and juvenile Parkinson's disease. One of the children involved in the research lives right here in Sioux Falls.
For five years, Alex Van Beek was a healthy young boy, but when he was halfway through Kindergarten, his parents started noticing some troubling symptoms.
"He would walk leaning over to one side. Then it progressed to where it affected mostly his left side," Alex's Mother Tracy Van Beek said.
After dozens of tests, doctor's visits, and questions doctors diagnosed the Sioux Falls boy with dystonia, a movement disorder that causes the muscles to contract and spasm involuntarily.
“You never assume you're going to have a disabled person in your family and it was life-changing," Alex’s Father Mitch Van Beek said.
Alex has been in a wheelchair since second grade. He also has problems communicating. But he's just as smart as any other 16-year-old and does many of the same activities as well; including having little fights with his little brother.
"He's cognitively very sharp and has a fantastic sense of humor," Sanford Dr. Michael Kruer said.
Dr. Kruer has been working with Alex. He just received an $860,000 grant to research dystonia and juvenile Parkinson's disease.
"Because dystonia typically isn't a degenerative disease, the symptoms he has now are unlikely to go away, but if we can get good control of his symptoms, it's our hope we can offer him a good quality of life and outlook for the future," Kruer said.
One of the things Kruer has been watching closely is Alex's progress since having deep brain stimulation surgery almost two years ago.
"He was one of the youngest patients to ever have it done," Mitch said.
So far the results have been amazing. Alex can now crawl to his wheelchair and sit up by himself. Both of those were not possible two years ago.
"Within weeks after the surgery, he gained back a good 70 to 80 percent of his motor control that he lost," Mitch said.
But Alex still hopes to one day he will be able to walk again and Kruer hopes he can make that happen.