Hundreds continue to walk for Normalville 7-year-old, cure for Rett syndrome
Hundreds of people will come together Saturday to raise money to help find a cure for a devastating disease that affects little girls.
The fourth annual Erika's Walk for the International Rett Syndrome Foundation was founded by Bill Bryner of Dunbar, whose granddaughter Erika Miller, 7, of Normalville has the disease.
“It's a very devastating disease that affects one in 10,000 little girls,” Bryner said. “Erika can't walk. She can't talk. She can't eat without a feeding tube. If they find a cure, maybe someday she will be able to communicate with us or someday be able to walk.”
Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2 that is first recognized in infancy and seen almost always in girls, but can be seen, rarely, in boys.
“To me there is no greater blessing than to be able to enjoy the simple pleasures of everyday life, and to me, Erika's fate and those of the other little girls is unacceptable,” Bryner said.
This year's 4.4-mile walk will take place from 9 a.m. to noon on the Sheepskin Trail in Dunbar Borough. Walkers pay $23 and after the walk are treated to an all-you-can-eat spaghetti dinner. Walkers who registered earlier will also receive a T-shirt.
The spaghetti dinner will be held at the Franklin Memorial United Methodist Church located next to the trail.
“As soon as they get back from the walk they can go right in and eat,” Bryner said.
Those who don't want to participate in the walk can still help by purchasing an all-you-can-eat spaghetti dinner for $8. Dinners are available for eat in or take out.
Bryner said last year the event had 400 walkers participate and served over 800 meals. They were able to raise $20,000 toward finding a cure.
“Research shows once proteins are normalized in the brain the symptoms go away,” said Erika's mother, Mary Lou Miller of Normalville. “They have successfully reversed it in mice. We've got to try to make this happen for the girls and that is going to cost a lot of money.”
Miller is grateful to those who participate, volunteer and sponsor the event each year.
“It's amazing that everyone comes together to help Erika and without research, Erika is simply not going to get better,” she said.
One of those volunteers is Jodi Ardabell of South Connellsville. Ardabell has a team that walks each year and also volunteers in the kitchen for the dinner.
“They are more than friends to us,” Ardabell said. “They are like family. We have just seen Erika struggle as she has grown. We would love to see a cure so other girls don't have to suffer from it.”
Ardabell said she also volunteers at an annual pancake breakfast the family hosts in the fall to benefit the same organization.
“I think it just touches your heart to be able to give of your time to help someone out,” she said.
Bryner said the event has 67 sponsors including The Ye Old Inn and The Italian Oven which donates all of the spaghetti, which he predicts they will use about 150 pounds of this year.
Walkers are welcome to register the day of the event. For more information, call Bryner at 724-880-6691.
Linda Harkcom is a freelance writer.