By the time Jude was three months old, he had seen multiple doctors and had started 24-hour feedings via a tube. Although he had various, unrelated symptoms, his GI system wreaked the most havoc on his little body. After countless tests and procedures, including a “last resort” muscle biopsy, Jude finally received a diagnosis of mitochondrial myopathy at 17 months old. The family pursued other opinions because the news seemed so unbelievable and grim; however, all experts agreed that Jude’s tests confirmed the condition.
After his diagnosis, Jude shocked everyone as he started to improve. He gained 9 pounds in 6 months because of a high calorie modification along with supplemental night feedings via his G-tube. He completed Early Intervention therapy. His vomiting subsided over time, and he started to eat more by mouth. All of these—and many more—steps contributed to his progress, and during the middle of Jude’s Kindergarten year, his doctor approved the removal of his g-tube.
The Manley family established the Jude Manley Research Fund through the United Mitochondrial Disease Foundation (UMDF) for many reasons. Jude’s parents believe many people with mitochondrial disease and other neurodegenerative diseases involving mitochondrial dysfunction can benefit from UMDF’s Research Grant program. In addition, Jude’s success story confirms the importance of proper diagnosis and better treatment options, which are both direct results of advancements in research. Most importantly, without research, publications, and trials, doctors and allied health professionals will never fully understand the role of mitochondrial dysfunction in human disease.
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