GAP, Pa. — The solid, simple exterior of this brick rancher along a rural road foretells the calm strength and comfort exuded by 4-year-old Olivia Horning’s young parents, Eugene and Jeanette Horning. Inside the family’s neat home, complementary shades of off-whites, grays and pinks decorate each room, including the kitchen and a living room full of toys and a play tent for Olivia and her nearly 2-year-old sister, Taya. On this hot afternoon, the gentle, low buzzing of a neighbor’s mower cutting the first hayfield of the season behind the Hornings’ backyard permeates the air, like the soothing hum of a mother crooning to her child.
Olivia appears full of delight and energy, her eyes looking from face to face around the room, her long limbs pushing and pulling this way and that. She listens to the voices in the room until her own soft voice perks up, forming words sometimes delicate, sometimes hard to distinguish, but always full of intent.
Her parents start to talk about the events that unfolded with their firstborn daughter Olivia, starting when she was 6 months old.
“Olivia was not learning to sit,” says Jeanette, her face full of concern remembering those puzzling days before Olivia’s diagnosis was clear.
Their family physician suggested the couple call The Pennsylvania Early Intervention program to help with developing Olivia’s delayed skills.
Olivia was evaluated and started occupational therapy at home. By 13 months, Olivia had a speech therapist. The Hornings also learned from various therapies how to work with Olivia themselves to increase her abilities, like sitting, eating and speaking, practicing them over and over. Olivia could learn, but it was very slow going, the couple said, and she only learned skills after many, many repetitions.
By now, it was clear to the Hornings that something was wrong and they wanted to know why Olivia was having problems. They were referred to the children’s hospital at Hershey Medical Center in Hershey, but were told it would take many months to get an appointment. They then tried contacting the Children’s Hospital of Philadelphia, which was also booked up.
By chance, a neighbor suggested they call the Clinic for Special Children in nearby Strasburg. The clinic specializes in diagnosing and treating rare genetic disorders. The Hornings got an appointment with the clinic’s doctor, Kevin Strauss, within weeks.
It turned out to be exactly the right place for their little girl.
“He met with us for nearly two hours,” Jeanette said. Strauss observed Olivia and talked to all three members of the family extensively.
“They took blood from all three of us,” she said.
After eight months of research on the family genes, it was determined that Olivia was missing her CTNNB1 gene, a rare problem flagged in about 15 children worldwide at the time. Since then, more children have been diagnosed with the help of a worldwide gene database, including one in Lititz, according to the Hornings.
These other children had similar physical features and the same symptoms as Olivia, although their symptoms varied in degree.
Little is known about this recently discovered mutation, but the Hornings were relieved to learn that the trait is not hereditary. It is a random mutation that can occur with anyone. Strauss assured the couple that it would be exceedingly unlikely for them to ever have another child with the disorder. Olivia’s younger sister, Taya, is healthy and has no problems.
Eugene, 30, grew up in nearby New Holland on his family’s dairy farm. Now he works with IBA Dairy Supplies selling dairy farm products and supplies.
Jeanette, 28, grew up in Penn Yan, New York, on a 50-cow dairy farm and has lived in Lancaster County for about 10 years.
Their love and concern for their daughters shows in every way.
“We live one day at a time,” Jeanette said. “We look forward to seeing what the Lord has planned for Olivia. We have learned so much from her. I am eternally grateful for that.”
“We can’t be thankful enough for our functioning bodies. We didn’t know, until Olivia came along,” Eugene said.
“Speech is the biggest problem,” Jeanette said. “The gene (that is missing is what usually) makes the connection between brain and muscles, so her learning has to take place a different way — through learning repetitively.”
That includes eating, moving, speaking and “everything she is doing,” Jeanette said. “But, once Olivia has learned something, she never forgets it!”
The prognosis is good that Olivia will walk and be able to do many things. It will just take her a lot longer to learn each skill through the repetitive learning method, which uses a different part of her brain than most children would use.
There is no cure or medication that will help. “A lot of therapy” is what the clinic advised the Hornings to do for Olivia after her diagnosis.
“She has a combination of high muscle tone (in her limbs) and low muscle tone (in her central body),” said Jeanette, so she has difficulty sitting up and walking. But Olivia is constantly on the move, crawling where she wants to go.
“She can’t run and play like a typical 4-year-old, so her energy has to come out somewhere. She moves a lot!” Jeanette said.
With hard plastic leg braces and assistive equipment, Olivia is slowly learning to walk upright.
“As far as mobility, she gets around better (now),” Jeanette said. “She has more freedom because of it.”
Olivia also has sensory processing issues and is very sensitive to sound, and the feeling, or textures, of things.
“She used to cry and cry around groups of people, like at church,” said Jeanette.
“She would drop Play-Doh as soon as she held it,” Jeanette said. “(The feeling of it) was too much for her.”
When she was almost 3, Olivia fell on the steps and broke her femur. She was in a body cast for a month.
“She became grumpy because she couldn’t express herself with signs,” Eugene said. “She was trapped in her own world.”
Her parents had taught Olivia to use sign language early on because she struggled to speak, but she would get very frustrated, they said. Jeanette started teaching her more sign language for “feeling” words, so she could express her emotions better.
Olivia had eye surgery for one of her symptoms, called strabismus, which interfered with her ability to see. The surgery didn’t help much, but subsequent work with a vision therapist helped a lot, and even improved her speaking and other social skills. She started talking about a month after beginning the eye therapy, Jeanette said.
“One year ago, she could only say eight or nine words and had trouble with certain vowel sounds,” Jeanette said.
Eugene was sitting with her outside one day when Olivia had a breakthrough and began talking.
Her parents say Olivia has blossomed even more recently, since she started school. She attends a school for children with special needs aged 3 to 5, where it is becoming obvious that Olivia is a highly social child.
At the table now, she is shoving paper and crayons at her toddler sister, tempting her to join in some drawing fun, while also asking questions of Mom and Dad, or offering up a song title she likes to sing.
“Taya is just what Olivia needed,” Jeanette said. “She is very protective of Olivia.”
Strauss and the clinic continue to serve as Olivia’s regular doctor.
“The clinic has as much time as you want,” Eugene said.
The clinic is monitoring Olivia for scoliosis because of her unusual posture and her weak core, so that they can manage any issues before they become a problem.
“The clinic is always available to us,” Jeanette said. “It’s hard to explain with words. ... On our first visit, Dr. Strauss had so much compassion. We felt like he was caring for our hearts. It felt like family.”
“That genetic testing anywhere else would have cost thousands (of dollars),” Eugene said, “but it was only several hundred (at the clinic).”
“I never regret going to the clinic. I’m just always glad to have a safe place at the clinic. I can ask them anything.” Jeanette said.
Olivia listens wide-eyed to Eugene’s soft, firm voice as he asks her a question, calming her. Mom holds a bouncy Taya while her steady gaze follows Olivia’s path everywhere she roams, from kitchen to playroom to garage and back again. It is clear that these girls are loved. And then soon, it’s nap time for the girls, and they scoot off to rest.
The clinic can provide such affordable specialized care because it doesn’t participate in typical health insurance. Large annual auctions raise about 30 percent of the clinic’s funds.
The next auction is 7 a.m. to 4 p.m. on Saturday, June 16. The auction is open to the public and held at Leola Produce Auction, 135 Brethren Church Road, Leola, Pennsylvania. Food, handmade quilts and furniture, wooden crafts, sporting goods, handmade toys and garden plants will be sold.
The Clinic for Special Children can be reached at 717-687-9407.