Conner uses adaptive sports to overcome physical obstacles, contributes to book
Bryce Conner is always smiling, even after three hours of physical therapy. His recent grueling therapy sessions of three hours a day, five days a week, left him tired and sore, but he always managed a smile for his therapists and even his mom.
“He never feels sorry for himself, sad or defeated,” said Jody Conner, Bryce’s mom. He got up early, spent hours in the car commuting and gave his absolute best each day to build his strength and endurance. “He never complained. He always brought the sweetest disposition and attitude each day.”
The 10-year-old was diagnosed with Leigh’s disease at the age of 5. According to the National Institute of Neurological Disorders and Stroke, Leigh’s disease is a rare, inherited neurometabolic disorder that affects the central nervous system. Symptoms most often appear in infants and children ages two and under, but can also occur in teens and
adults. The earliest signs may be poor sucking ability and the loss of head control and motor skills. In an MRI, evidence of the disease appears as lesions on the brain, particularly in the midbrain or brainstem areas, and the syndrome causes a deterioration of cell tissue. In Bryce’s case, it was triggered by a virus. Symptoms usually progress rapidly and lead to a loss of motor skills. Leigh’s disease is a terminal illness; however, research continues to search for a cure.
Before the viral illness, Bryce was a healthy, fully functioning 5-year-old. After the virus struck that triggered his genetic disease, he lost the ability to walk, talk and sit up.
“When I asked his doctor what we could do, he referred us to Noah’s Children’s Hospice and Palliative Care,” said Jody. The news was devastating. With the outlook so dim, Jody began researching possible therapies, which included intensive physical therapy and naturopathic options.
After 4 years of the combined protocol, Bryce has had a remarkable recovery, said Jody. Although he is still in hospice care, he uses his wheelchair to get around and live an active lifestyle. In spite of his challenges, Bryce has been able to participate in a variety of sports: archery, wheelchair basketball, swimming, cycling, power chair soccer, and even rock wall climbing. “He is a happy and medically stable 4th grader who is learning to navigate this world from a different physical perspective.”
Bryce attends Beulah Elementary School. He would have changed schools when his family moved to Chester and into a single story house, but he had friends at Beulah and a very supportive team, so the school district allowed him to stay.
Jody said her son’s biggest struggle is fitting in. He has slurring of his speech from the initial brain damage caused by the disease, so communicating with his peers is sometimes hard. She believes people assume that his being in a wheelchair means he is intellectually or cognitively impaired.
“But this is not the case,” she said. “He is on grade level in school and receiving accommodations for his challenges. While he cannot run and play like typical kiddos, Sportable allows him to be an athlete, on a team, and competing with children much like him.”
Sportable is an adaptive sports club that strives to create opportunities and transform the lives of those with physical disabilities and visual impairments. Sportable is based in Richmond and offers sports training and competitions for all ages, all backgrounds, and those with varying abilities.
Two years ago, at a Sportable tailgate fundraiser, Jody and Bryce were approached by Katie Sloan about a book opportunity. Katie’s son Josh was in an accident in his early 20s that left him with a spinal cord injury. He is a wheelchair user as a result and the current Community Outreach Coordinator for Sportable.
“Katie had a book in mind, but didn’t know who to write about,” said Jody. “But as soon as she saw Bryce, she knew she wanted the book to feature him. Through the writing and publishing process, we have developed a wonderful friendship with Katie and the illustrator Carol Ray.” The book is titled “Ready Set Go! Bryce!” and it can be purchased directly from Jody Conner or Katie Sloan, or online through Dementi Publishing at https://www.dementimilestonepublishing.com/ready-set-go-bryce.
Through it all, Jody took an active role in Bryce’s treatment protocol. “When Bryce got sick and the doctors told us there was no treatment or cure to his disease, I did a deep dive into mitochondrial function, the respiratory chain and what supplements would help him. After five years of this, he is an anomaly in children with this disease, as it is normally very progressive. Jody saw such improvement in Bryce that she wanted to help other families facing the same challenge. I went back to school to study naturopathy.” After 4 years, she is ready to take her boards to receive a Doctor of Naturopathy. “Naturopathy is the reason our boy is still with us today and so very healthy.”
Jody has advice for other families facing difficult health challenges. “No matter where you are in your journey, be thankful. If faced with challenges, face them with determination and hope with a smile on your face. Push yourself to be your absolute best. Play and laugh, approach daily tasks with a care-free optimism. And above all, no matter your health, circumstance or situation, be grateful for every ability and blessing you have.