Support Coordination

Isa Stands for Inspiration

June 12, 2012

 There’s no doubt in Jason’s mind that his 3-year-old daughter is a miracle.

One look at the bubbly, brown-eyed girl and you have to agree there is something special about Isa. But hear her story and you’ll understand her father’s resolve.

“She’s an inspiration,” Jason said.

  Her parent’s first-born, Isabelle, whom family and friends fondly refer to as “Isa,” entered the world with no complications in a Columbia hospital. By all accounts, she was healthy. But three days later, the new parents were at the doctor’s office when their daughter began to seize and struggle to breathe. The infant was rushed by ambulance to the hospital. 

A short time later, doctors delivered the bad news: Isa had suffered a stroke and there was little hope she would survive. If she did, the best-chance scenario was Isa would be blind and have other developmental disabilities.

“We were devastated,” Jason said.

The stroke had wiped out Isa’s occipital lobe, which is the visual processing center of the brain. As Jason explained, “It’s the part of the brain that tells you what you’re seeing.”

Overwhelmed with the diagnosis, Jason and his wife, Sarah, were relieved to learn about Boone County Family Resources and the First Steps program, Missouri’s system of coordinated early intervention services for children from birth to 3. Seemingly overnight, Isa began receiving services, including physical and occupational therapies, in the hospital where she stayed for almost a month.

Once home, Isa continued therapy and improved rapidly. Over the next three years, she continued receiving occupational and physical therapies and began orientation and mobility training, an education program that teaches individuals with vision impairment how to navigate their environment safely and independently. In addition, the family received “Special Instruction” or SI through First Steps to help them meet the needs of their daughter. Isa also participates in other activities such as adapted gymnastics, therapeutic horseback riding and Kindermusik.

Today, Isa plays like most children her age, except she has to steer through her environment with extra caution because the lower level of her eyesight, just below midline, is gone. Besides that, she is almost up to speed with her peers.

“Over the last year, we were able to stop all therapies with the exception of OT and SI due to her progress,” Sarah said. “She no longer has to see the neurologist in St. Louis or the team” at Children’s Center for the Visually Impaired in Kansas City. Isa’s visits with the speech therapist are down to every other week.

Isa doesn’t need glasses, and her parents don’t like the idea of their daughter using a seeing-eye cane.

“We are afraid she might not work to overcome her challenges,” Jason said. “At this point, we don’t see her needing to use adaptive equipment.”

Isa will participate in the Columbia Public Schools Early Childhood Development Program until kindergarten with hopes that she will be ready to begin school in the regular classroom. 

“This little girl who had little hope of survival at the beginning was told by her ophthalmologist at her last appointment that her lower field of vision is gone, which means she may be clumsy, but what toddler isn’t?,” Sarah said. “He has hope that her lower field of vision could also improve and other than, her vision is perfect.”

Jason hopes his daughter’s story will encourage other parents faced with heart-wrenching diagnoses to believe in the possibilities.

“We want to inspire people to realize what a child can overcome and become,” he said. “Don’t give up on the situation.”  

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