‘Erika’s Walk’ raises money for Rett syndrome research
?DUNBAR — Bill Bryner has made it a personal mission to see that local funds are raised to help with research for treatments and a possible cure for a devestating neurological disorder suffered by his 5-year-old granddaughter with the second annual “Erika’s Walk.”
Named for Bryner’s granddaughter, Erika Miller, the event is being held once again June 18, the day before Father’s Day, from 9?a.m. to noon, with a roving start in the parking lot of Franklin United Methodist Church.
The walk will take place along the Sheepskin Trail encompassing 4.4 miles.
“It couldn’t be successful without the help of family and friends,” said Bryner.
Bryner said he is hoping to go above and beyond last year’s total that raised more than $12,000 and drew 440 participants from as far as Erie with proceeds to go to the International Rett Syndrome Research Foundation (IRSRF).
Miller, the daughter of Gary and Mary Lou Miller of Normalville, was diagnosed with Rett Syndrome (RTT) shortly after she turned a year old.
While RTT occurs almost exclusively in girls, it produces symptoms similar to those of autism combined with cerebral palsy, Parkinson’s epilepsy and anxiety disorders.
Most babies with RTT develop normally at first, but their progress often slows by the time they reach 18 months of age, according to the Mayo Foundation for Medical Research.
Children with RTT have increasing problems with motor function that may affect their ability to use their hands, speak, walk, chew and even breathe.
In some cases, children have to rely on feeding tubes in their stomachs, such as Erika.
Bryner said “Erika’s Walk” has grown from 18 sponsors last year to 49 this year who each contributed $50 to have their name placed on the back of a purple T-shirt that will be given to each registered walker.
There is a $22 donation for the event, which also includes an all-you-can-eat spaghetti dinner.
Non-walkers can also purchase a dinner at a cost of $8 for adults and $6 for children.
Bryner, who makes the sauce from his own recipe, said he cooked 48 gallons last year, which served more than 800 people who came out to show their support.
“It was nice to see such compassion,” said Mary Lou Miller.
While Erika is unable to speak, Miller said her daughter uses a special computer to communicate that operates through eye contact.
“It’s amazing every time she sees me and I see her,” said Bryner, Mary Lou’s father.
While Erika completed preschool this year with a personal aide, Mary Lou Miller said she continues to receive occupational therapy, physical therapy and speech services.
“She knows her colors, her name and numbers,” said Miller.
Miller added Erika is able to watch videos on the computer, which was also equipped with a weather program so she could participate with her classmates.
“She is smart,” said Miller. “She just needs a different way to communicate.”
Miller added the family travels twice a year to New Jersey to see a doctor who specializes in Erika’s needs.
While Rett Syndrome was successfully reversed in mice in 2007, funds are desperatly needed to help see the damage of it reversed in humans.
Miller said there were about 12 children diagnosed with RTT recently selected for a clinical study of a new drug being administered at Children’s Hospital in Boston, Mass., which they decided to opt out of without knowing more about its safety.
However, Miller said if the drug provides proven results, she would consider sending in Erika’s name to be accepted for the second part of the study, which would require daily injections that, as a nurse, she would give her, and monthly trips to Boston.
“We’re praying about it,” said Miller. “They would teach us about the drug and its side effects.”
Miller said for now Erika is holding her own and is now on the growth chart.
Last fall, Erika received a $5,000 chair lift from proceeds raised with the help of her grandmother, Gwen Bryner, through the third annual quilting bee.
Bill Bryner also lent a hand organizing a pancakes and sausage breakfast with the proceeds going to help Erika in conjunction with October being Rett Syndrome Awareness month.
Miller said the lift, shaped like an elevator, is used to help transport Erika more easily from the house to outside and into the car making her less home bound.
“She’s growing and so are her needs,” said Bill Bryner.