Septo-optic Dysplasia

Chase Broyhill, 4, plays with a Slinky during his physical therapy session at LifeScape AbleKids Pediatric Therapy. Three years ago, Chase was diagnosed with septo-optic dysplasia, a very rare disorder of early brain development.

Justin Wan, Sioux City Journal

SIOUX CITY | Chase Broyhill stands at the top of a set of wooden stairs flapping his hands and making guttural sounds in delight as a rainbow Slinky rapidly tumbles down to the floor on Wednesday morning.

Lori Hixson, the 4-year-old's physical therapist at LifeScape AbleKids Pediatric Therapy, grasps his tiny hands, as she encourages him to "step down" onto the yellow stars and orange and red dots stuck to the steps.

"Where's your dot?" Hixson asks, as Chase dangles his foot over the edge before firmly planting it on the next step. "There you go. Good job, buddy!"

Back on the ground, Hixson hands the Slinky to Chase. He brushes his palms across the toy's edges.

"He loves seeing the different colors of the Slinky," she says.

After a few moments of play, Hixson helps Chase slowly make his way back up the stairs, something he couldn't do a year ago.

Chase, who is legally blind and incapable of talking, running or jumping, has septo-optic dysplasia, a disorder of early brain development. He wears a brace on his left leg to help him walk.

Septo-optic Dysplasia

Shaun Broyhill, of Sioux City, is researching how augmented and virtual reality could help kids like his son, Chase, better perceive their environments.

Chase's father, Shaun Broyhill, of Sioux City, says he hopes therapy will help Chase find ways to communicate. While Chase understands some basic commands, Broyhill says it's difficult to tell when his son is hungry, thirsty or tired.

"He has his own language. He understands what he's saying, but we don't," Broyhill says of his son, who has started to mimic other people. "If you say, 'Hello,' he'll sound out 'Hello' back, but he doesn't understand what it means. He's about an average 2-year-old if he was 2."

When Chase was 9 months old, Broyhill says he and his wife, Misty, noticed their son was falling behind developmentally. It took him longer to roll over, sit up and crawl. They first took Chase to a local physician, who referred them to Children's Hospital in Omaha. A year and a battery of tests later, the Broyhills finally learned Chase's diagnosis.

"Three years ago today, we found out the actual condition. When they first told us, I had never even heard of it," Broyhill says of septo-optic dysplasia. "There's very few doctors that even know what it is."

The main features of this rare congenital malformation syndrome include underdevelopment of the optic nerves, which carry visual information from the eyes to the brain; abnormal formation of structures along the midline of the brain; and pituitary hypoplasia, underdevelopment of the pituitary gland, which produces several hormones that control growth, reproduction and other critical body functions.

Septo-optic Dysplasia

Physical therapist Lori Hixson helps Chase Broyhill, 4, kick a soccer ball during a therapy session at LifeScape AbleKids Pediatric Therapy in Sioux City. Chase, who has a rare disorder of early brain development, is legally blind and incapable of talking, running or jumping.

Broyhill says Chase, whom he describes as a very curious and happy kid, meets all three of the criteria for the condition, which only occurs in 1 in 100,000 births. He says Chase's optic nerve is the size of a pinhead and he has very little white tissue in his brain.

Chase, who can see only about five feet in front of him, struggles with depth perception and experiences seizures. His pituitary gland, Broyhill says, is the size of a pea and will never grow, which means Chase will soon need hormone therapy.

"His vision will never get better, but hopefully it will never get worse," Broyhill says.

Septo-optic Dysplasia

Physical therapist Lori Hixson helps Chase Broyhill, 4, step over a set of hurdles during a therapy session at LifeScape AbleKids Pediatric Therapy in Sioux City. Hixson describes Chase as a "really sweet kid."

Chase regularly sees five different doctors -- a neurologist, endocrinologist, pediatrician, ophthalmologist and optometrist -- and attends weekly physical, occupational and speech therapy sessions at LifeScape AbleKids. Broyhill, who works as a database administrator for BPI, estimates that he has spent approximately $125,000 out of pocket since Chase's diagnosis, since health insurance doesn't fully cover all of the services his son needs.

Broyhill, who has a master's degree in cognitive psychology from Iowa State University and is working on his doctorate through Regent University, is researching how the use of virtual and augmented reality could help kids like Chase better perceive their environments.

"Don't give up hope and do whatever you can for your kid," he says to other parents of children with rare conditions like Chase's. "Even kids with difficulties like his can be happy kids."


Health and Lifestyles reporter

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