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A Glimpse of Hope

“He’s a ball of joy. He’s super happy all the time, independent, and just an all-around great kid.”

Maverick, a bright and energetic boy who’s almost three, was born with optic nerve hypoplasia, a syndrome that resulted in blindness in both eyes. Tracy, his mom, first noticed when his pupils, rather than staying steady, seemed to bounce, unable to focus or track objects or people.

Though they were first time parents and unsure of what was causing his symptoms, Alvaro and Tracy knew that they needed to get help for their son. At two months old, he received his diagnosis and his parents were informed that it was unlikely he would ever be able to see. Maverick also has a related condition where his pituitary gland does not handle growth hormones appropriately, so his parents would have to give him nightly injections, or his growth would most likely be dramatically stunted. In addition, a sudden drop in blood sugar could result in seizures.

At two months old, Maverick was referred to Innovative Services NW’s Pediatric Therapy & Neurodevelopmental Center by his primary care physician. He was unable to hold his head up straight and was developing tightness in his neck muscles. Jessica, Maverick’s Physical Therapist, worked for several months to show the family exercises and stretches that would help straighten his posture. “Every time they taught us a new exercise he immediately caught on to it. He just was amazing,” Tracy said. They applied their knowledge at home, working with their son at every opportunity, all the while Jessica continuously assured the new family that they were taking the right steps for their son. “That positive reinforcement that we were doing the right thing—that made a big difference to us,” Alvaro said.

During Maverick’s first Christmas, when he was three months old, they noticed something spectacular: when he was near their Christmas tree, he seemed to notice its glowing lights. In that moment, they realized Maverick had slight vision in his right eye. This was actually the cause of the tightness in his neck muscles: he was holding his head in a way that favored his right eye because he was able to see more clearly when he tilted to the left.

Jessica continued to help Maverick achieve his developmental milestones. She helped him learn to crawl, balance, and eventually, walk. It was expected that his vision impairment would lengthen this process, but, with physical therapy, he started taking steps six months earlier than originally anticipated.

At five months old, Maverick started Innovative’s Early Intervention program. An Early Childhood Educator came to the family’s home every week to address Maverick’s sensory concerns. Aurora eventually became Maverick’s primary Early Childhood Educator. Given his complicated diagnoses, she and Jessica knew they must consider the “whole child” and all of his needs in everything they chose to do. Because his sight is impaired, his other senses are heightened, which can cause him to have strong reactions, especially to touch. “He now plays with play dough and sand… He sticks his hands in anything and everything that’s messy!” Tracy laughed. Aurora also helped him achieve social, adaptive, and physical goals by implementing therapy techniques with the family during their home visits. “Our son loves Aurora,” Tracy said. “They have a really great bond. She’s been an absolute joy to have in our home. She’s been here since he was a year old, so she feels like a part of our family.”

His sensory and physical improvements, independence, and his self-confidence are ever-growing, thanks to the teamwork of his therapist and early childhood educator and, of course, his parents. He’s testing into average ranges or higher in development for children his age. He runs, jumps, plays and laughs just like you might expect of any two-year-old. “Early intervention is possible because parents know their child best; working as a team we can make a positive early experience for the child”, Aurora said. “I’m very proud of Maverick’s parents and extended family. Because of all their hard work, Maverick will be enrolling in preschool, with additional supports, this fall.”

His parents are optimistic for the future, Alvaro shared, “It was all because of Innovative. We didn’t know what we were going to do. We were young parents. They were our backbone in every decision that we’ve made with him and they were our little piece of hope to hold onto.”

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