Few parents delight more in finding sand and mulch in their son’s shoes than Stephanie and Stuart Harvey. These telltale signs of having an active, adventurous, 10-year-old boy at home are, for them, signs of hope that their son John will continue surpassing expectations.
The Harveys learned of John’s diagnosis before he was born. “At our ultrasound appointment, we learned that he had myelomeningocele spina bifida,” says Stephanie. “The doctors prepared us for the worst: he could have significant brain damage, as well as no use of his legs or anything below his belly button, where there was an opening on his spine.”
John was transferred to Children’s Healthcare of Atlanta immediately after birth and spent his first day of life in surgery. His spine was closed and, a week later, surgeons inserted a shunt or tube into his brain to prevent the buildup of fluid. “We spent two weeks in the NICU. We were so well educated and informed and came home with a support system around us to help us start this new adventure,” says Stephanie.
As the years passed, John grew and met key milestones, and his parent’s fears subsided. “We could see from the beginning that many of the things that we were prepared for were not the reality for John,” says Stephanie. “We were seeing ability, movement and things that they did not think he would be able to do.”
Therapists at Children’s quickly saw John’s motivation and potential as well. “John has this quiet confidence and inner wisdom that has really taught us a lot,” says physical therapist Erin Eggebrecht. “He is now standing up on his own and walking pretty much wherever he wants to, when he wants to.”
John’s parents credit the many resources available at Children’s and his extracurricular activities – including wheelchair basketball and horseback riding -- for his progress and his confidence. “The robotics program in particular motivated him to do more and really enjoy his therapy,” says Stuart.
John was one of the first children to participate in the robotics program at Children’s, which uses technology like video games and anti-gravity treadmills to encourage kids to practice and repeat important movements. Also instrumental in John’s mobility are leg braces custom built for his needs. “As patients like John grow taller and heavier, their orthopedic needs definitely change,” says orthotist Staci Mackay. “We have to provide more support in order to keep him upright and ambulatory.”
Today, thanks to his determination and support from family, friends and care providers, John is thriving. “He really doesn’t see himself as being different,” says Stephanie. “It’s really encouraging and inspiring for us as parents just to watch him live his life. Even with as much as he’s endured, there’s a contentedness about him. He thrives where he is.”