In my previous article, I discussed the first half of my experience; now, I will detail the second.
Hello, Internet! Cole here. Last week, I went on Christmas vacation with my family. The vacation, like most major events, deserves to be recorded for posterity, so I will transcribe its events here. I hope you will enjoy reading about it as much as I enjoyed living it.
Regaining His Strength
Eight-year-old Bryce Conner, who has a neurologic disorder that causes progressive muscle weakness, worked with Michelle Froede, PT, DPT, during a weekly visit to Children’s Hospital of Richmond at VCU’s Brook Road Campus this fall.
(Photo by Doug Buerlein)
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
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. e doctor suggested Bryce have an MRI and referred him to Children’s Hospital of Richmond at VCU (CHoR). e MRI and genetic testing a few months later con rmed 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. e disease, which has no cure, often becomes apparent after a viral infection. e severity
of symptoms depends on the percentage of a ected 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 erapy Center. e 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 nding 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 Chester eld 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.”
Hello, Internet! Cole here. This month, I attended Deep Run’s production of the musical version of Footloose. I didn’t expect much out of it; it was a high school play, after all, and I mainly went to obtain a point for National Honor Society. However, I soon discovered that my initial judgment was wrong: the play went excellently, showcasing an interesting plot, above-average acting skills, and a devoted backstage crew.
Hello, Internet! Cole here. Sorry I haven’t uploaded anything for a while; I’ve been having a rough time with junior year this fall, and I just haven’t been able to integrate this column into my schedule very well. I seem to be approaching recovery, though, so hopefully I should be able to create more content in the near future.
When George Baskerville, a project manager for Wells Fargo Advisors, saw an article about the construction of a baseball diamond adapted especially for players with disabilities, he was intrigued — but he had no idea it would lead to the start of a decade-long passion. Out of curiosity, he took his then 9-year-old son to the ribbon-cutting. Since that day, he has spent hundreds of Saturday mornings at that same site, doing everything from setting up equipment to running wheelchair-bound players around the bases.
Meet Hayleigh, 16
Chesterfield | Services: Children’s Hospital Foundation Heart Center
“They lost her for about 15 seconds,” Michelle says, remembering the blur of events surrounding the trip her daughter, Hayleigh, 16, took by ambulance to the emergency room at Children’s Hospital of Richmond at VCU (CHoR).
Hi, I’m Cassidy and I have a very real condition called PANS. I am not sure what it stands for. All I know is that it has something to do with microplasma which is in your blood. What happens is when the microplasma rises it causes me to get very nervous.
Megan Blake has a special connection to the DSAGR’s Annual Step Up for Down Syndrome 5K and Family Festival.
When Megan’s daughter, Katie, was born in 2006, she sought information and resources to help with the overwhelming feeling of having a child with Down syndrome. Through her search, she found the DSAGR (Down Syndrome Association of Greater Richmond) which, at that time, was small and consisted of a handful of families, monthly meetings, picnics and events to bring families together.