More than a Day at the Zoo: Mom Hosts Zoo Walk to Bring Awareness to Son’s Disorder

DETROIT - June 25, 2014 - PRLog -- A day at the zoo is a hallmark of childhood for many kids, but Sunday at the Detroit Zoo was extra special for three-year-old Kavin Young. His family, led by mom Rosemary Young, hosted the very first Dystance4Dystonia Zoo Walk in Michigan to help improve awareness of dystonia, the neurological disorder with which Kavin was diagnosed last year. Over 500 people gathered to spend a fun day among the zebras and polar bears and help support urgently-needed medical research and programs to help families struggling with this little-known, often debilitating disease.

“The turn-out was mind-blowing,” says Ms. Young. “It goes to show you how the dystonia community in Michigan shares the same enthusiasm for awareness and was happy we have this opportunity to come together.” She organized the event with support from husband Edward Young Jr. and two children, Kaylee Jo Young and Kavin.

Dystonia is a chronic disorder characterized by excessive, involuntary muscle contractions that result in twisting, repetitive movements as well as sustained abnormal postures. There are multiple forms of dystonia that impact people of all ages and backgrounds.

At age two, Kavin started walking on his toes for no apparent reason. He then developed painful, prolonged muscle cramps in his legs. His pediatricians were puzzled. “It was very hard at first,” recalls Ms. Young. “At the time he had a speech delay and was non-verbal. I didn’t know what was going on, and he couldn’t tell me. I felt helpless.” The muscle spasms spread to affect both feet, legs, hands, arms, fingers, mouth, and tongue. A neurologist diagnosed Kavin with generalized dystonia. “When he would have a particularly bad day it was very disheartening because he was clearly in pain, crying, but he didn’t want to be touched. Even the clothes touching his body hurt. So as a mother all I could do was stay near him, hoping my presence helped him get through it.”

Through the Dystonia Medical Research Foundation, Ms. Young was able to connect with other parents of children with dystonia for information and support. She also met other affected individuals and families in Michigan. Meeting others in the community inspired her to host the Dystance4Dystonia Zoo Walk: “I wish the public knew what dystonia was. I wish they knew some of the people I have met. They don’t always have obvious outward symptoms—they may look ‘normal’ on the outside but inside they’re in pain and really struggling.”

Funds generated by the Dystance4Dystonia Detroit Zoo Walk will fund cutting edge medical research toward improved dystonia treatments and a cure as well as programs that help educate affected individuals and families about dystonia and provide coping resources.

“I hope those affected with dystonia and their caregivers came away from the Zoo Walk knowing that they are supported in Michigan and that they do matter,” says Ms. Young. “Hopefully one day soon there will be a cure—with events like this and with the help of the Dystonia Medical Research Foundation, we can get there.”

The Dystonia Medical Research Foundation (DMRF) is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families. The DMRF can be reached at 800-377-3978 or www.dystonia-foundation.org.