Two 6-year-olds, Crissy Bishop and Konnor Opp, are to be the recipients of the 2014 Children's Benefit at Walnut Grove Campground July 4-5.
Tyann and Mike Miles of Bloomville are the parents of Crissy Bishop. When Crissy was a baby, her mother was living in another city. By a year old, Crissy had suffered through 18 ear infections. Tyann said the pediatrician prescribed antibiotics each time, but did not seem overly concerned about the frequency of the infections.
"By a year old, she wasn't even sitting up on her own. I told the doctor, 'Something is not right. This is not normal,'" Tyann recalled.
The doctor thought Crissy likely would catch up at her own pace. Unconvinced, Tyann took her little girl to another doctor. That physician immediately referred Crissy to an ear, nose and throat specialist. Two days later, Crissy was having surgery for a ruptured right ear drum. The doctor compared Crissy's hearing to the muffled sounds one hears underwater.
"That's what she heard for her first year of her life; she couldn't sit up or crawl because it threw her equilibrium off," Tyann said.
After the surgery, Crissy improved physically until she turned 2. Tyann said everything "just stopped." By then, Crissy was seeing Dr. Thomas Meade in Tiffin, as well as specialists.
"We just got her full diagnosis a few weeks ago. She has what they consider an 'MECP2' gene mutation, and it's a form of Rett's syndrome," Tyann said. "It's hereditary. It's carried in my genes and was passed down her. Up until now, we never even knew."
Tyann said she did lose a child to hydrocephalus, but her other children have no serious health issues, nor do other family members. Rett's syndrome affects girls almost exclusively, causing developmental delays, neurological problems, breathing difficulties and inability to speak. Tyann said Crissy has better mobility than most children with Rett's. At night, a machine helps Crissy breathe when her brain does not tell her to do so.
"She also has scoliosis in her spine, but she wears a brace 12 hours out of the day for us," Tyann said.
At the Opportunity Center, Crissy gets physical, occupational and speech therapy. She also attends a summer school program three days a week for two weeks. To stay active in the winter, the family has a membership at the YMCA. Tyann said Crissy enjoys swimming, but she can't be in the sun long.
"During the summer, I do as much as I can with her here at home, as far as therapy. The therapists at the school are really good about telling me different things I can keep doing with them when school's not in session," Tyann said.
Although non-verbal, Crissy can utter a few "important" words, such as "Mom," "Dad," "eat," "puppy" and "kitty." Tyann said Crissy also can use sign language she learned at school. A 13-year-old brother and an 11-year-old sister help care for Crissy.
Tyann said the siblings probably will ride with their sister on the golf cart poker run.
Dana and Brad Opp are the parents of Konnor, who was born with septo-optic dysplasia. The National Institutes of Health describe this as a rare condition that occurs during a child's early brain development.
Its cause is unknown, but mutations in three genes have been identified in those with the the disorder. Environmental factors also are suspected.
The disease prevents the optic nerve from fully developing, resulting in blindness. Other symptoms include developmental disabilities and hormonal issues that cause slow growth and low muscle tone.
About two years ago, the Opps took Konnor to China for umbilical stem cell treatments they hoped would help him, especially his eyesight. Prior to the trip, they and members of their family conducted fundraisers to collect enough money for the treatment. The cost was $26,000.
"He had improvement on his mobility, but not on his sight," Dana said. "He can take steps with help."
Konnor is enrolled with Crissy Bishop at the Seneca County Opportunity Center. Dana said the therapy and classes have been beneficial to their son. The Opps also work with Konnor at home and take him to the Achievement Center in Westlake for intensive therapy.
Once a month, Konnor and his mother spend a week at the center. Dana is a home health nurse who is a paid caregiver for her son. She said proceeds from the benefit will help with travel expenses and dental surgery Konnor needs.
"We're trying to get him a feeder chair. It costs $5,000 to buy and our insurance won't pay for it," Dana said.