Payton was three weeks old when her first seizure appeared. After 8 months of constant seizures, we were sent to the University of Michigan to see a pediatric neurologist, where we told that Payton had atypical symptoms of Infantile Spasms. We opted to treat her symptoms with an intense dose of steroids. I assumed that once the seizures were under control, we could go on living the life we had planned, however our neurologist informed us that we now needed to get to the root of the problem. 

Payton was then subjected to a muscle biopsy and spinal tap. Eight weeks later, our neurologist informed me that Payton suffered from a Mitochondrial Disease, Complex 1 & 4. Feeling naïve and ignorant, I Googled her condition. After allowing the news to digest, we were sent to U of M for a question and answer session. The typical questions were addressed; however the typical responses to most of them were “we don’t know.”

It was there that we were informed Payton was “special,” beyond what we already knew. Research has been limited due to lack of awareness and funds and our questions still go unanswered. Since research is slim, we are unable to be given any kind of road map as to where Mito will take on our baby girl. Payton is considered to be severely, multiply impaired. She cannot walk, she cannot speak, and she cannot chew her own food. Every little thing we take for granted is a huge hurdle for Payton to overcome. There is no treatment offered for her beyond a large dose of vitamins. We try to shield her already damaged immune system from illness and we press on with any education we can offer her. We pray that one day our little girl will walk, say “Dada or Momma,” or just even hold her own bottle.