In 2014, when Jackson was two-months-old, first-time parents Patricia and Michael noticed that he was not tracking objects with his eyes. At first their pediatrician was not concerned, but as the issue continued they decided to bring Jackson to see an ophthalmologist. The ophthalmologist immediately suspected Septo-optic dysplasia and recommended an MRI which confirmed the diagnosis.
Septo-optic dysplasia is a disorder of early brain development. Although its signs and symptoms vary, this condition is traditionally defined by three characteristic features: underdevelopment (hypoplasia) of the optic nerves, abnormal formation of structures along the midline of the brain, and pituitary hypoplasia.
While some children with SOD have some sight or can see shadows, Jackson is completely blind in both eyes. He also requires a nightly growth hormone injection due to pituitary hypoplasia causing a low growth hormone count.
Scared and unsure of the next steps, the Bunces began researching where to go for the best possible care. Their search brought them to Children’s Specialized Hospital. At their first appointment, they knew they were in the right place! Their new pediatrician explained the diagnosis and developed a therapy plan that included early intervention and outpatient therapies in Mountainside.
Mary Rose Mehorter is an Early Intervention Program Educator with Children’s Specialized and is certified in Blindness and Visual Impairment. She began working with Jackson when he was just a baby. Spending time with Jackson from an early age and learning what motivates him, Mehorter was able to gain his trust and begin the process of helping Jackson learn to travel safely through his environment. “Working with Jackson was a wonderful experience,” said Mehorter. “His whole family was supportive, learning and using the techniques I taught them to help reinforce the skills Jackson was developing. Even his little brother, Mason, got on-board.”
In addition to early intervention, Jackson received outpatient therapies in Mountainside including, physical, speech, occupational and feeding, from the time he was a baby. Now 5-years-old, Jackson is a smart, happy kid with an amazing smile. Walking with a cane and moving comfortably, he continues to receive outpatient therapies in Mountainside and has regular appointments with Dr. Aronsky in Special Needs Primary Care.
Patricia and Michael are so grateful that through the years they have been able to plan all of Jackson’s therapies and services through Children’s Specialized. Patricia noted that having his therapists and doctors coordinate his care and communicate about his case was a key factor in his progress. Jackson’s little brother Mason, who does not have special needs, is also able to see Dr. Aronsky, making family logistics much easier. “Children’s has everything we need in one place and I don’t have to worry about Jackson getting the best possible treatment, all the doctors, therapists and nurses are amazing,” said Patricia.
The Bunces recognize that they receive excellent compassionate care and when they saw the opportunity to help give back to the hospital through the Walk N’ Roll, they knew they wanted to participate. In 2017 they organized Jackson’s Joggers and won the Best Personal Fundraiser Award. In 2018, Jackson’s Joggers took home the Team Spirit Award!
“We love being a part of the Walk N’ Roll and look forward to it every year now,” said Patricia, “it’s a fun event, with lots of music, which Jackson loves, and games and food. I feel like we’re a part of the big Children’s Specialized Hospital family, even some of Jackson’s therapists have joined our team.”
Jackson started Kindergarten in September, the Bunces are so proud of the progress he has made.