Until she was 2 ½ years old, Kendall Conner was a happy, healthy, and typical little girl. However, in the fall of 2016, she started exhibiting gait abnormalities and tripping and falling more often than normal. Kendall’s parents were told by orthopedic specialists that it was femoral anteversion, or toddler in-toeing, and that it would resolve itself within a few years.
By early December, however, it became clear that something else was wrong. Kendall started crawling instead of walking, showed significant balance and strength issues and exhibited unusual stiffness and a lack of control of her feet and ankles. Soon, she could not walk or stand without assistance.
Following several hospitalizations, tests, and medical consultations, doctors diagnosed Kendall with Leigh syndrome after finding a mutated gene in her mitochondrial DNA.
Kendall’s diagnosis hit her family like a freight train. They experienced a whole range of emotions – extreme sadness, anger, denial, frustration, hopelessness, and fear. But seeing the toughness and determination that their little girl has shown through this process has inspired them, as well as Kendall’s team of doctors, therapists, family, friends, and prayer warriors who have helped give Kendall the support she needs.
Kendall takes a cocktail of vitamins and medicines each day, and has regular sessions with physical therapists, occupational therapists, and speech therapists.
She has lost function in gross and fine motor skills, and has developed some speech difficulties as well, but her family is learning to be thankful for each day they get to spend with her, and to not let the fear of what tomorrow might bring overwhelm the joy and love that she brings each day.
Fortunately, progress has been made in the last two decades toward the development of treatments for Leigh syndrome and mitochondrial disorders overall. Multiple pharmaceutical companies are now involved in developing drugs for clinical trials, and researchers are working on innovative approaches like gene therapy that could possibly lead to a cure for mitochondrial disease.
Advancements like these are possible in part thanks to the generosity of others who give money and time to find a cure for Kendall and others like her.
In October, Kendall’s family is hosting Brewing Hope, a fundraiser for the United Mitochondrial Disease Foundation. Please consider attending the event, becoming a sponsor or making a donation in honor of Kendall. Your tax-deductible contribution will go toward promising research aimed at finding a cure for Leigh syndrome. Learn more about Brewing Hope here.