Father's Day Dystonia

June 15, 2008 1:34:53 PM PDT
Everyone has their own special way of celebrating Father's Day. A Chicago-area father of two is just grateful that he is able to be physically active. His disability has made that difficult.

Over a year ago, 40-year-old Art Kessler had surgery to help control his dystonia, a neurological disorder that causes his body to twist. Now, with two active young boys, he'll be able to keep up with them. Art and his wife Wendy have 4-year-old Ben and Ryan, who just turned 1.

Although, Art was diagnosed with dystonia at 12, the symptoms started four years earlier.

"When I first started having symptoms my foot started to turn in and then the symptoms spread to the rest of my body. So my other leg effected my arms became stiff and twisted uncontrollably, and then later in my life my back started to become effected to my back would be arched when I walked and my head would be pulled over," said Art.

Growing up was not easy for Art or his parents, Dennis and Barbara Kessler.

"When Arthur began to have symptoms it was very strange, we went to lots of doctors and couldn't find a diagnosis. It took us many years going to lots of wonderful doctors here in Chicago," Dennis said.

"It's really difficult to watch your child, having difficulties doing the things every other kid around him is doing normally," said Barbara.

Dystonia can sometimes be genetic, which was the case for the Kessler. His parents were worried for their grandchildren.

"In dystonia it only needs one carrier," said Dennis. "The important thing is that now Arthur's son is not a carrier because they have had in vitro fertilization in a way that can detect the defective gene and they were able to have their sons without being carriers."

Last year, Art had deep brain stimulation surgery to control his dystonia.

"What they do is they put stimulators in a part of your brain that controls movement and those stimulators override what goes wrong with dystonia," said Art. "My children was one of the main motivations for having the surgery. I wanted to be able to be an active parent and run and play with my kids."

Ben understands what happened to his dad.

"They had to drill your head, they had to drill daddy's head because they putted batteries and wires in you daddy," said Ben.

"The thing I think that was really sad in the beginning was when we had Ben, Art had not yet had his DBS surgery and it was very hard for him as Ben started to get more active and Ben would want to go around to the playground, and there would be times when Art wouldn't go with us and he wouldn't say why," said Wendy.

But now daddy is going to go everywhere with his family.

"I love you daddy," said Ben.

Art and his family are going hiking to celebrate Father's Day.

For more information on dystonia and the deep brain stimulation surgery go to www.dystonia-foundation.org.


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