Meet Danny Messerschmidt! He was born on October 29, 2014. He has two siblings also affected by TANGO2 related mitochondrial disease. His older brother Jackson passed away in 2015, and his younger sister McKenna who is almost 2 years old. Danny was diagnosed in September of 2016. There were no complications before, during, or after his birth. He met milestones of rolling over, sitting, and crawling relatively on time. We noticed his head size was tracking small at 6 months of age, and his growth was slowing down but other than this he seemed like a very typical infant. He ate well, slept well, and was very happy.
At 11 months of age, he started having difficulty sleeping and was not eating as well. He had his first seizure shortly after this, a tonic clonic seizure. At this time, development plateaued. His feeding skills regressed, and he really struggled to grow. At age 15 months, he was diagnosed with gastroparesis. He also had swallowing problems. Around this time, we started to see episodes of muscle weakness that had a rapid onset and lasted anywhere from minutes to hours before resolving. Once seizures were controlled well with medication, we started to see development progress again. He began walking at 22 months of age.
At age 2, he received a feeding tube in his stomach, which helped him grow and took pressure off of trying to get him to eat enough and stay hydrated. He experienced significant weakness after anesthesia. It took him two days after surgery before he could bear weight on his legs. He had leg weakness for almost two weeks after surgery but did fully recover. Today, he is two years seizure free and is growing well. He has not required any hospitalizations during illnesses. He attends a special education preschool as well as physical, occupational, and speech therapy for developmental delay and sensory challenges. He loves playing with his little sister and is very social. He loves being the center of attention, and although he has few words, he does a pretty good job of making everyone around him laugh. You can bet he is the class clown at his preschool.