Erika's Walk in Dunbar raises awareness of Rett syndrome patients - Tribune-Review

By Barbara Starn

Published: Saturday, June 1, 2013, 9:00 p.m.
Updated: Saturday, June 1, 2013

Bill Bryner of Dunbar has taken his passion for hiking and made it a mission. He has organized the fourth annual Erika's Walk to take place June 15 on the Sheepskin Trail in Dunbar to raise money for research on Rett syndrome.

Bryner began the walk as a way to help his 7-year-old grandaughter, Erika Miller, who has Rett sydrome. Erika is the daughter of Gary and Mary Lou Miller of Normalville.

"She's family," Bryner said. "Why wouldn't I help?"

Rett syndrome is a mutation of one of the genes on the X chromosome. For this reason, the syndrome affects females almost exclusively. Male fetuses who have this mutation rarely survive to term. Rett syndrome patients develop normally for the first six to 18 months of their lives, after which language skills and motor skills regress. Rett patients generally are prone to panic attacks, to inconsolable crying and lack of social and emotional reciprocity. Because these symptoms are so similar to those of autism, many Rett patients are initially misdiagnosed as having autism. Physical symptoms include seizures, short stature, an unusually small head and gastrointestinal problems.

Rett syndrome can be divided into three stages: a stage of normal development, a stage of rapid regression, and a stage in which some skills can be relearned.

Common treatments for these symptoms include beta-blockers to help alleviate seizures and physical therapy to promote coordination and muscle development.

Mary Lou Miller said that her faith and her family sustain her in her role as a caregiver to Erika.

"Erika takes her nourishment through a feeding tube," Miller said. "I make sure she gets the calories she needs. Also, she's growing, so lifting her is more challenging now. Most of all, she can't talk, so it's hard for me to diagnose illnesses because she can't tell me what's wrong."

Miller notes that several drugs show promise of relieving Rett symptoms in mice. She hopes they will be on the market soon.

For more information, call Bryner at 724-880-6691.

Bryner hopes to see a cure for Rett syndrome.

"I hope that someday all Rett patients will walk on their own," he said.

Barbara Starn is a freelance writer.

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