Walk for rare syndrome to step off on Saturday

Event to raise awareness, funds for condition

Michelle Self watches her son Alex Bentley play with Hamden, his therapy dog. Ms. Self is a member of the board of trustees of the Williams Syndrome Association.

Alex Bentley is a friendly 12-year-old who sees the good in people.

A student at Perrysburg Junior High School, Alex would like to give everybody a hug, but he has been taught not to do that.

"He can't help being super friendly," explains his mother Michelle Self of Perrysburg who is helping to organize Walk For Williams: Northwest Ohio to raise awareness about Williams syndrome.

Alex is one of only a handful of children in the region who have the rare syndrome, a genetic condition characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking abilities, including highly socialable personalities, advanced verbal skills, and an affinity for music.

The one-mile Walk for Williams will be held Saturday at Grace United Methodist Church, 601 East Boundary St., and nearby Woodland Park. Registration begins at 9 a.m. with the walk at 10 a.m. Activities include entertainment, lunch, and carnival games.

"We just want people to come out and meet our kids and understand a little bit more about them," Ms. Self said.

Event organizers include Greg and Sherry Grover of Toledo whose 3-year-old son, Brody, has Williams syndrome, and Deanna Durham of Bucyrus, Ohio, whose 1-year-old son Spencer has been diagnosed with the syndrome, she said.

Ms. Self met the Grovers through therapy sessions scheduled back-to-back for their children, a situation that provided parents with time to talk. Parents agreed that an awareness and fund-raising event should be held in this area, and after Ms. Self became a member of the board of trustees in January of the Williams syndrome Association, efforts advanced to make an event happen.

"Perrysburg is the perfect location for people coming on highways," she said, explaining that because Williams "is a fairly rare syndrome," families will travel significant miles to attend.

Parents welcome the chance to talk with others about what they do in various situations, such as whether they let their children stay home alone, and if so, at what age, said Ms. Self, an adjunct professor at Bowling Green State University. Her husband Bill Bentley is a nuclear engineer at the Davis-Besse nuclear power plant.

Their older son, Bill, a senior at Perrysburg High School, does not have the syndrome. He volunteers as a music therapy assistant at music therapy camps. Alex has attended several such camps.

Until a couple of years ago, Williams syndrome was thought to affect 1 in 25,000, but the number is closer to 1 in 10,000, said Terry Monkaba, executive director of the Williams syndrome Association. That means for many years, an "awful lot" of people were misdiagnosed or undiagnosed, she said.

The association, now in its 30th year, provides resources, support, and the latest medical information. Raising awareness is one of its goals.

Awareness can increase the chances of early diagnosis, Mrs. Monkaba said.

The sooner a diagnosis is made, the sooner intervention can begin, such as enrolling a child in music and language therapy and in other programs to help overcome developmental delays, Mrs. Monkaba, of Troy, Mich., said.

Her son Ben, 26, who has Williams syndrome, is a student at a music academy. A member of a band, he plays drums and sings. He is learning life skills, but he will never live completely on his own, said Mrs. Monkaba who has been active in the association since 1982.

At that time, 200 families were involved in the group, but it has grown dramatically.

Rather than continuing to conduct operations out of a volunteer's living room or kitchen, the association hired an office manager in 1994, and she became executive director in 1996. Based in Troy, the association has a staff of five.

About 5,000 families are connected with the association, and it has about 15,000 friends, relatives, and other supporters, she said.

The association has granted $150,000 in scholarships for post-secondary education to students with Williams syndrome and has donated $130,000 for research, Mrs. Monkaba said.

Funds are raised through such events as the Walk for Williams in Perrysburg.

For additional information, contact Ms. Self at maselfadvocate@hotmail.com or go to walk4williams.org.