“He went from a normal kid to functioning like a 6-month-old,” Jody Conner recalled of her then 4-year-old son, Bryce. “It was devastating.”
In September 2013, Bryce, who up to that point had been developing typically, began to tire easily and have ankle and leg weakness. Jody took Bryce to his pediatrician who was concerned he was showing signs of brain damage. The doctor suggested Bryce have an MRI and referred him to Children’s Hospital of Richmond at VCU (CHoR). The MRI and genetic testing a few months later confirmed Bryce had Leigh’s disease, a rare neurodegenerative condition that creates defects in the body’s mitochondria, part of the cells that turns nutrients into energy, and causes rapid loss of motor and cognitive skills. The disease, which has no cure, often becomes apparent after a viral infection. The severity of symptoms depends on the percentage of affected mitochondria, which in Bryce’s case was 88%.
“He couldn’t answer a simple yes or no question,” said Jody, who also carries the Leigh’s disease gene but does not have symptoms. “He choked on food, couldn’t sit up and began having seizures.”
As Bryce worked to regain his strength, he started aquatic therapy at CHoR’s Bon Air Therapy Center. The warm water helped relax his tight muscles so he could focus on relearning skills like rolling over during early sessions with his physical therapist, Michelle Froede, PT, DPT. He also worked with occupational and speech therapists to work on strengthening his throat muscles so he could eat without choking and improve his speech. At the same time, he started taking regular doses of vitamins, which boosted his immune system and helped him regain his cognitive abilities.
Jody said she appreciated how Bryce’s therapists communicated to share and support Bryce’s therapy goals as well as coordinated with other CHoR specialists and clinics as needed. (Bryce is followed by specialists from cardiology, ophthalmology and the Spasticity Clinic at CHoR.) Over the years, he has received botox to relax his leg muscles and in September 2016 underwent heel cord lengthening and hamstring release surgery, which has allowed him to get out of his wheelchair and use a walker more consistently.
“Bryce is a hard worker,” said Michelle, “and so much fun to work with. He’s also super competitive so I try to make therapy fun by finding something cool to play [like his favorite board game] as a reward for his work.”
Two years ago, Michelle said Bryce could barely stand without assistance. In May his wheelchair was converted to have electric wheels and a hand-held joystick to make mobility easier and less tiring. Now Bryce is moving around the hospital with a walker and minimal assistance from Michelle. She wants to continue helping Bryce improve his endurance so he can get around as independently as possible, especially at his Chesterfield County school where he started second grade this fall.
“Now he has energy for education and socialization,” Jody said of how the enhanced wheelchair has made being with friends and going to school easier for Bryce. “He tears up and down the street in his wheelchair while the other kids are on their bikes. It’s a huge reason he’s come so far this year.”
Now that he’s in school full-time, Bryce is adjusting his therapy schedule at CHoR. Although he’s taking a break from speech and occupational therapy, he visits CHoR’s Brook Road Campus every week for physical therapy with Michelle. On any given Monday afternoon, he can be found walking the halls, trying to beat Michelle at Candyland, and making her laugh with his puns and jokes.
Bryce also continues his therapies at home and has gotten involved in a variety of adaptive sports including karate, archery, swimming, bicycling and baseball. Like many 8-year-old boys, Bryce also loves video games and recently had his own character created in his favorite game, Plants vs. Zombies, as part of a Make-A-Wish Foundation wish. He said he likes coming to CHoR but was more interested in talking about his Halloween costume – Foxy, a character from a video game – during a visit this fall.
“Bryce would not have the abilities he has without his therapy,” said Jody. “I can’t wrap my head around how far he’s come. I want to thank the people who have given my son his function back.”