Walk helps those with Angelman Syndrome

Linda Yoakam's church in Naperville was the site of a charity walk several years ago, and she decided to participate.

As she walked the route with a friend, she noticed signs with facts about Angelman syndrome - a rare chromosome abnormality that causes mental retardation.

In that way, along the route, she accidentally found the diagnosis for her son Billy that she had sought for 16 years.

"Prior to that, none of the therapist or physicians could give us a correct diagnosis, until we walked the walk," said Yoakam, a Naperville resident. "That's why it's so special to me. It provided us and gave us awareness to it, which we shared with our little branch of the medical community."

Yoakam and about 600 others again will walk with purpose at the Angelman Syndrome Foundation Walk that steps off at 9:30 a.m. Saturday, May 15, from Word of Life Lutheran Church, 879 Tudor Road, Naperville.

The ASF walk began in Naperville in 1999 and now includes 22 sites throughout the country - all of which will host walks Saturday.

Angelman syndrome, a neuro-genetic disorder that occurs in one of every 15,000 live births, is characterized by developmental delay, lack of speech, seizures, and walking and balance disorders, and is often mistaken for cerebral palsy or autism.

Money raised from the walks throughout the country - about $800,000 annually - goes toward research on the condition and experimental therapies to help those with Angelman and their families.

The foundation also has facilitated networking and support among the family members of Angelman individuals, who require 24-hour supervision and typically have a normal life span of about 70 years or so. These individuals also often don't sleep much, which becomes wearing on caregivers.

"Other families who have these connections are able to solve these problems together," Yoakam said. "Billy's now outgrown (sleep issues), but at the time I sure could have used another mother to talk to."

Now the walk's co-coordinator, Yoakam said the charity event is near and dear to her heart because it brought answers for her that doctors spent years trying to figure out.

As Yoakam walked the route that day in 2003, one sign read, "Angelman individuals are mute but have excellent hearing."

Yoakam instantly thought of how Billy would never speak a word, but if he heard a bag of potato chips open downstairs, he'd come running.

Another sign read that seizures are typical with Angelman syndrome. Yoakam remembered exactly when Billy's seizures started in kindergarten.

Yet another said that Angelman individuals have a strong affinity for water.

Images of the water stains on her dining room ceiling where Billy's enthusiastic hours-long baths upstairs had leaked down through the ceiling instantly came to mind.

She spent years looking for a diagnosis.

"It was a lot of unanswered questions," Yoakam said. "I never knew if he would grow out of things. I thought 'maybe he'll start speaking when he's 3? Maybe he'll start speaking when he's 6? Maybe he'll start speaking when he's 9?' Knowing what he has helps me plan for the future better."

Today, more than 25 facts line the 2.5-mile route to inform walkers.

Texas Roadhouse is hosting a picnic for walkers after the event. Other activities include face painting, games, a DJ, a raffle and several minor league baseball teams will have mascots on hand.

"It's a rare disorder that not a lot of people know about and that's one of the other reasons we gather for this - just to get the word out," said Sheila Wenger, special events coordinator at the Aurora-based ASF office.

More than 50 Angelman individuals will participate in the walk that is open to people of all ages.

"We were lucky that we were diagnosed," said Yoakam, whose son Billy will participate.

People who can't make it to the race still may donate. Visit the foundation's website for more details.

For information, visit angelman.org or e-mail Yoakam at lyoakam@aol.com.

If you goWhat: Angelman Syndrome Foundation WalkWhen: Registration begins at 8 a.m. Saturday, May 15; walk begins at 9:30 a.m.Where: Word of Life Lutheran Church, 879 Tudor Road, NapervilleCost: Free, donations welcomeInfo: angelman.org or lyoakam@aol.com