In some ways, Jude Manley is a typical five-year-old boy. He is anxious to turn six so he can start karate. He wants to be an artist, a conductor, “an actor like WALL-E,” and a daddy when he grows up. He also loves to smile, talk, and eat – things we all take for granted but which represent small miracles for Jude when considering that he was non-responsive in infancy, late to speak, and required tube feeding for nourishment up until recently.
Julie Manley and her husband Brian knew something was wrong with their son Jude when they noticed his lack of appetite and frequent violent reactions to food. “He was an apathetic eater and often choked or vomited. He also stayed tired and was late on his growth milestones,” Julie Manley said.
To witness one’s own child struggling in this way is nothing short of tragic. The Manley’s immediately consulted doctors about Jude’s distressing gastrointestinal symptoms and reactions to food in general. After rounds of blood work, all of which revealed inconclusive results, their pediatrician referred the Manley’s to specialists at Blair E. Batson Hospital for Children. At Batson, an advisory team came together to assess Jude’s condition, including a gastroenterologist, a neurologist, and geneticist. The team’s determination was that Jude Manley has a rare mitochondrial disorder.
Mitochondrial diseases are a group of disorders caused by dysfunctional mitochondria – the “powerhouses” found within cells that convert the food we eat into energy. When cells do not have enough energy, they can become injured or die; in turn, organs can fail. Such conditions are a profound challenge for a person of any age, but are all the more precarious for young children who are still developing.
“Mitochondrial disease is not a familiar term to most people,” Julie Manley reflects. “However, mitochondrial dysfunction is implicated in type-2 diabetes, cancer, Parkinson’s, Alzheimer’s, and cardiovascular disease. Unfortunately, there are no real treatments for mitochondrial diseases other than dietary changes and vitamin supplements. Jude doesn’t have much energy when his body is fighting infection or illness, and he can regress if he doesn’t get enough rest or food.”
If mitochondrial disorders are the equivalent of an ongoing battle raging at the cellular level, good nutrition is the primary weapon for winning the battle. In the case of Jude Manley, and other children like him with mitochondrial disorders, nutritional consulting and advising is a key factor for managing the disease successfully. In fact, good nutrition can be a life or death prospect for people with mitochondrial diseases. Thankfully, Jude has defied his initial prognosis, exceeded expectations, and has stabilized, with most symptoms largely having become resolved thanks to a closely monitored well-balanced diet.
“With the help of the professionals at Batson, we trained Jude to eat by mouth without gagging or vomiting. Although the treatments that initially worked best at providing him perfect nutrition was a g-tube, Jude eventually went from a 24-hour tube-fed schedule to eating carrots, broccoli, lettuce, spinach, and even tomatoes. He loves salads and vegetable dips. In fact, because of Jude, and the advisors at Batson, our whole family eats better.”