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Date: 7/9/2015
EAST LONGMEADOW – Alyce Devenitch is a 16-year-old who finds the utmost joy in dancing. However, her passion is impeded by a severe form of Tourette’s syndrome (TS), which affects every aspect of her life.
People with Tourette’s syndrome often experience tics – movements or sounds that are uncontrollable to an individual experiencing them, Alyce told Reminder Publications.
“Every person with tics, their tics are different and a tic can be anything,” Alyce said. “I’ve had a lot of self-injury tics.”
Alyce’s tics include falling down, banging her head, kicking objects, and punching herself, she said.
Alyce said she has experienced tics since she was 7 years old, which developed into Tourette’s syndrome when she was 14.
Marcia Devenitch, Alyce’s mother, said for the past two years Alyce has been unable to attend East Longmeadow High School (ELHS).
Marcia said Alyce was on the swim team while she was attending ELHS and is also an avid runner, despite having a tic that causes her to fall down.
“She comes back with cut elbows and knees – she still does it every day,” Marcia said.
During her first year out of school, she was home tutored. However, this year Alyce has been unable to continue her studies because her tics have become too severe.
“It basically takes up everything in my life and I tic constantly,” Alyce said. “It affects everything I do.”
Marcia said there is no cure for Tourette’s syndrome. Alyce has tried numerous medications, none of which have worked to alleviate her symptoms.
“They’ve all had some pretty nasty side effects,” Marcia noted.
She added that Alyce will undergo an experimental brain surgery called deep brain stimulation this summer in New York City that will help reduce her tics.
The surgery would involve doctors drilling holes on each side of Alyce’s skull, Marcia said. Electrodes are then placed in her brain and a battery pack is placed in her chest or stomach.
“She’ll be subjected to the electrodes in her brain and the point is to block impulses from the part of the brain that’s causing the tics,” she added.
Marcia said the family’s insurance company has denied the procedure twice.
“Now we’re filing a grievance along with the help of the physician’s office,” she added. “The doctors who are doing [the procedure] with Alyce have 13 other [operations] with people with TS. They’ve dealt with insurance companies, so they kind of know how to get around it. So, we’re praying that it’ll get approved. If not, we’ll have to do some sort of fundraising.”
Marcia said she knows of two young women who also underwent the surgery and have seen improvements.
Alyce said she hopes to become a professional dancer of a dance instructor in the future. She has a background in lyrical, jazz, and modern dancing as well as ballet.
“I hope that I can get back into school and finish high school and go to college,” she added.