Meet McKenna Messerschmidt. She was born on 4/28/2016. She has two older brothers also affected by this disease- Jackson who passed away in 2015, and Danny who is 3 years old. There were no concerns before, during, or after McKenna’s birth. She met initial developmental milestones of rolling over, sitting up, and crawling on time. She struggled with being extremely fussy, had feeding problems, and sleep difficulties. She required to be fed every 2 hours for several months, never taking much formula at one time, and never seeming satisfied. At 5 months of age, her two older brothers were diagnosed with TANGO2 related mitochondrial disease, so we decided to get her tested as soon as possible as well.
When she was 8 months of age we found out that she also had TANGO2 related mitochondrial disease. It was at this time that her weight started dropping, and she was really struggling to learn to eat solids/baby food. She would seem tired with eating, and struggled with her swallowing coordination. Once she reached 11 months old, she received a feeding tube in her stomach to help her get enough nutrition. This tremendously helped her ability to seem satisfied with feeds, grow, and sleep well. At 13 months of age, she had her first seizure, a tonic clonic seizure that lasted around 1 minute. At 15 months of age, we started to see a new type of seizure, myoclonic atonic seizures. She started by having only a few per day but they soon increased in intensity and frequency, causing her to fall and hit her face and head several times per day.
She now has a helmet with a face mask to help give her some protection. With her onset of seizures, also came a developmental plateau. She is now 23 months old and still not walking. She now has been diagnosed with several other seizure types and epileptic encephalopathy. She has experienced episodes of gastroparesis, hypoglycemia, muscle weakness, ataxia and tachycardia with illness, requiring hospitalizations. She currently receives physical, occupational, and speech therapy to help with her developmental delay and sensory challenges. Despite her frequent seizures and difficulty progressing with development, she remains happy. She is very loving, and enjoys playing with her older brother. The two of them enjoy playing chasing games, and getting into all kinds of mischief together. McKenna is very social, and loves to greet everyone she comes in contact with by waving and saying “Hi!”