At 3, Theo Church already knows how to put others at ease. He shows you what he can do.
Theo, son of LeAnn and Travis Church, rural Kincaid, was born with almost one-half of his spine missing as well as one lung and one kidney.
The disability leaves Theo with no functioning legs and a slightly contorted body. He weighs not quite 19 pounds. Theo maneuvers by pushing himself across the floor with his arms.
Theo has Caudal Regression Syndrome, a rare disease.
Despite his symptoms, “he’s really, really healthy,” said LeAnn, noting he rarely gets sick.
LEANN’S PREGNANCY with Theo went smoothly until a routine ultrasound at week 28 detected a void in the baby’s spine. From then until he was born at full-term, the pregnancy was rife with worry.
“We were told he may not survive, as well as what to expect if he did,” LeAnn said. “That was the worst part. The diagnosis and the initial shock.”
At the time, LeAnn was an elementary teacher in Garnett. Travis farms with his dad, Richard. The Churchs also have a son, Trevor, 6.
Theo was born Feb. 27, 2008, at Overland Park Regional Memorial Center, after which he was whisked away to Children’s Mercy in Kansas City.
“Because he was born by cesarean I had to stay at the Overland Park hospital,” LeAnn said during those first few days.
In all, Theo stayed at Children’s Mercy only two weeks before he was released to go home with his family.
“We thought he’d have to be in there much longer. Maybe up to two months,” LeAnn said.
Probably the biggest surprise during those first two weeks was that it wasn’t until Theo was 10 days old that specialists discovered Theo had only a right lung and one kidney.
“Having one lung is even more rare than having Caudal’s,” LeAnn said.
ONCE AT HOME, the young family adapted.
With plans to build a new home on their 20 acres, the design was changed to accommodate Theo’s needs. The single-level home has three-foot wide doorways and rooms designed to adjust to other needs. In the family room, for instance, a light switch is positioned about 18 inches from the floor — Theo height.
Theo attends Iola Pre-School, a school operated by the ANW Special Education Cooperative and where students with special needs and those with no physical or behavioral problems interact.
“About half the students are model students,” LeAnn said. “It helps both groups. It raises the awareness of normal children of those with special needs, and it helps children like Theo to try harder.
“The kids are really good to Theo and make sure he doesn’t get discouraged or down. They play on his strengths.”
Once or twice a week Theo works with Vickie Snavely, a physical therapist with ANW Co-op.
He also receives annual evaluations by spine, lung and kidney specialists.
LeAnn’s background as an elementary school teacher also has been a lifesaver for Theo, a precocious child. Hundreds of books line the playroom wall.
“It used to be that I’d have to read him 10 books a night,” she said. “Now it’s four or five, plus during the day.” When Theo was tested last year, he scored a year ahead of his peers demonstrating his insatiable appetite for learning.
AS FOR LEANN, 33, and Travis, 34, they rely on their friends, family and faith to help them face the challenges of raising a special needs child.
LeAnn is part of a foursome of mothers with special needs children who meet regularly.
“We all have different situations, but amazing similarities,” LeAnn said. “It’s nice to be with other people who seem to understand.”
LeAnn is the daughter of Delbert and Eddyra Nelson. Travis is the son of Richard and Lou Church, who own a quarter-section of land. During the off-season Travis also does construction to help supplement the family’s income.
The Churchs attend Kincail-Selma United Methodist Church.
“We’re lucky we’ve had a strong faith,” LeAnn said. “We’ve had to rely on it more lately.”
The couple have been married not quite 12 years. Both are graduates of Kansas State University.
Faith, family and a strong marriage will help the young couple face what are sure to be more-than-normal challenges for their son.
“We know if his breathing becomes more cumbersome he’ll need surgery,” LeAnn said. “But the less intervention, the better. We just take one day at a time.”
