BETHANY, Okla. (BP)–She was a perfect-looking tiny bundle of joy. All 6 pounds, 10 ounces of her. She was everything her parents had hoped and prayed for — a beautiful little girl. They named her Ashlynn.
Yet Diana and Bryan Runion never took Ashlynn home from the hospital.
“We didn’t know that Ashlynn had any problems until I tried to nurse her, and she wouldn’t eat,” Diana said.
There still wasn’t a great deal of concern because nurses told Diana and Bryan it often takes a while for babies to “get the hang” of eating.
But doctors soon discovered Ashlynn didn’t have the ability to suck or to swallow. The baby also began having trouble breathing and was experiencing frequent seizures.
Ashlynn was put on a ventilator to help her breathe, while a feeding tube was inserted into her stomach.
Because she requires around-the-clock care, when Ashlynn was able to leave the hospital, she went directly to Children’s Convalescent Center in Bethany, Okla.
The Runions say Ashlynn’s condition has doctors stumped. They believe she has a rare genetic disorder called Zellwagers Syndrome.
“They know so little about it, they can’t give us a prognosis,” Diana said.
The Runions said there is a one in four chance another baby will be born with the same condition Ashlynn has. “They’ve told us that another child we have could be normal, could carry the gene or could have the syndrome,” Diana said. “But we decided to take the chance. We are expecting another baby in April.”
Ashlynn celebrated her first birthday Aug. 27, and no one knows if she will reach her second birthday.
The baby is medicated to keep down the severity of her seizures, so she is not active enough to develop strong muscles, although she can grip her mommy’s and daddy’s fingers on occasion.
Bryan and Diana moved from Indiana to Midwest City, Okla. three years ago, about a year after they were married.
The couple met while Bryan, who is from Georgia, was stationed at Grissom Air Force Base in Indiana, Diana’s home state.
“We met at a church party,” Diana said.
They moved to Midwest City when an air reserve technician’s job opened for Bryan at Tinker Air Force Base. They are members of First Baptist Church, Midwest City.
Diana has missed only one day of being with Ashlynn since she was born, and that was because she had a fever and nurses wouldn’t let her near Ashlynn for fear the baby would get sick.
“If I have a cold, I have to wear a mask around Ashlynn, because she is susceptible to germs,” Diana said.
Diana spends the day rocking Ashlynn and reading and singing to her. She is joined in the evening by Bryan, who talks to Ashlynn, strokes her cheeks and holds her hand. At times, the staff will let Bryan and Diana bathe Ashlynn.
“We know how to do everything, including suction her and take care of her feeding tube,” Bryan said.
Diana said Ashlynn looks at her when she reads and sings to her.
“She knows I’m her mother.”
In addition to spending time with Ashlynn, Diana also has been reading the Bible and doing Sunday school lessons with a 4-year-old girl who has no parents who come to see her. ”She’s a very social child, and she just gravitated to me,” Diana said.
Lately, Diana has been telling Ashlynn about heaven.
“I told her it is a beautiful place, and when she is ready to go, God is up there and will take care of her.”
