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Monday, September 15, 2008

Walk targets girls' ailment

The strollathon was a fundraiser for research into Rett syndrome, a developmental disorder.

Bristol Embrey, 5, and her mom Tina Embrey have Kyle Edgell draw a caricature. The Embreys came to the Strollathon for Rett Syndrome to support Isabella Pate, who has the disorder.

Photos by Jeanna Duerscherl | The Roanoke Times

Bristol Embrey, 5, and her mom Tina Embrey have Kyle Edgell draw a caricature. The Embreys came to the Strollathon for Rett Syndrome to support Isabella Pate, who has the disorder.

Participants in the fourth annual Strollathon for Rett Syndrome walked one mile of the greenway in Wasena Park.

Participants in the fourth annual Strollathon for Rett Syndrome walked one mile of the greenway in Wasena Park.

Judy Danby pushes her daughter Jacky, 10, during the fourth annual Rett syndrome strollathon in Wasena Park. Rett syndrome is a genetic disorder, primarily in girls, that affects motor and communication skills.

Judy Danby pushes her daughter Jacky, 10, during the fourth annual Rett syndrome strollathon in Wasena Park. Rett syndrome is a genetic disorder, primarily in girls, that affects motor and communication skills.

Approximately 75 flower pots line Wasena Park in honor of all the girls in Virginia with Rett syndrome.

Approximately 75 flower pots line Wasena Park in honor of all the girls in Virginia with Rett syndrome.

"Ready, set, stroll!"

Those words signaled the start of the Strollathon for Rett Syndrome on Sunday in Roanoke's Wasena Park.

About 250 walkers -- some with wheelchairs and strollers -- and even a handful of brave young sprinters made the one-mile jaunt on the greenway in the sweltering afternoon heat to raise money for Rett syndrome research.

Rett syndrome is a developmental disorder that predominantly affects girls' motor and communication skills. Worldwide the rate of Rett syndrome ranges from one in 10,000 to 23,000 live female births.

Angel cutouts bearing girls' names were placed in small terra cotta planters along the edge of the greenway to honor the more than 70 girls statewide who have been diagnosed with Rett syndrome.

Eight of the girls -- including some from Roanoke County, Lynchburg and Manassas -- took part in Sunday's event, the fourth annual strollathon and silent auction.

Petrina Pate, who helped organize the event, said the event raised more than $30,000. All the money raised is sent to the International Rett Syndrome Foundation and flagged specifically to fund research, Pate said.

Her daughter Isabella is a kindergarten student at Glenvar Elementary in Roanoke County and was diagnosed with Rett syndrome when she was 2 years old.

"We noticed something was wrong at 17 months," Pate said.

The toddler, who had been able to feed herself and speak a dozen words, suddenly lost her vocabulary and the functional use of her hands. About 10 months passed before Isabella was diagnosed after a series of medical tests.

Jacky Danby's path to diagnosis was similar. As an infant, she had seizures, and as a toddler she struggled to sit up, according to her mother, Judy Danby of Bedford County. At 19 months, Jacky was already seeing a neurologist when she lost the ability to speak, crawl and use her hands.

Danby vividly recalls visiting the doctor's office almost a decade ago with a list of questions about Jacky's symptoms. The last one was, "Could she have Rett syndrome?"

Danby knew very little about the condition, but the neurologist agreed it could be a possible diagnosis. The doctor told her not to jump to conclusions, but immediately Danby went to the Internet to read everything she could find about Rett syndrome.

Jacky, now 10 years old and a student at Goodview Elementary School, primarily communicates with her eyes by blinking and pointing.

"When she gets highly motivated or very excited she can say 'mom,' 'bye,' 'yes' or 'no,' " Danby said.

Explaining Jacky's condition is not always simple, she said. Adults sometimes stare and whisper, but children usually are more forthcoming with questions.

"I tell them: She doesn't speak like you. She speaks with her eyes and with her heart," Danby said.

Rett syndrome is the only autism spectrum disorder with a known cause, according to the International Rett Syndrome Foundation. The foundation's Web site states Rett syndrome is caused by a genetic mutation on the X chromosome that can be identified through a blood test. While there is no cure or treatment for the condition, the strollathon's participants are working to change that.

"It keeps growing every year," Danby said.

More than a dozen students from the Hollins University organization Students Helping Achieve Rewarding Experiences volunteered at the event and walked away with more than the experience.

Pate's father, Norman Jones of Princeton, W.Va., was the highest bidder on a tabletop charcoal grill.

"Three girls from Hollins were lamenting because between them they didn't have $5 to buy the grill," Jones said.

He won the auction and gave the grill to them.

The women from Hollins said they plan to put the grill to work at a fundraiser of their own -- an annual students-versus-faculty olympiad to raise money for Roanoke Area Ministries.

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