Our Story

The news that our family was due to have a new addition was only that more precious when I found out our second child would be the baby girl I’ve always dreamed of. One boy, one girl, a Dad and a Mom, how much more picture perfect can it get? Our family would be complete upon our little girls arrival. Our doctor called on January 24, 2005 asking for us to come that evening to induce labor for the next day. Since our son was 9lbs 12oz our doctor felt it best not to put me through that again and chose to induce labor the second time around. Our beautiful Payton Grace DeWitt was born January 25, 2005 weighing exactly 2lbs less than her big brother. It was obvious from the moment we saw her she was a Angel sent from God, little did we know how accurate that statement would be later on in life.
When Payton was 3 weeks old she started having seizures. At first the seizures would last 10-20 seconds. As she grew, the seizures did too. They began to last anywhere between 1-4 minutes and would come approximately 2-5 times a day. After 8 months of constant seizures we were sent to U of M to see a pediatric neurologist. She immediately admitted Payton to a 72 hour EEG where we told that Payton had atypical symptoms of a condition called Infantile Spasms. We were given two choices. The first was to wait a while and see if the pattern continues to form more characteristics of Infantile Spasms or we could be proactive and treat the seizures with an extremely harsh steroid treatment called ACTH. We took option # 2 which left us with 10 weeks of administering daily shots of ACTH into Payton’s little thighs. Before this treatment Payton would smile, she rarely cried and overall she was happy, beautiful baby. The steroid treatment turned her into a bloated, unemotional baby. She never cried when we gave her the shots, she didn’t smile and she had loss any kind of gross motor skill she had previously worked so hard to develop. On the upside, the seizures evidentially subsided when she was 11 months old. It took a few weeks of being off the steroid shots, but she finally started to demonstrate some emotions, however she still wasn’t the same. She obsessively sucked on her fingers and eventually her whole hand and continues to do so now even when it’s bleeding and raw. I assumed that once the seizures were under control we could go on living the life we had planned, but low and behold I was wrong. The neurologist at U of M informed us that we now needed to get to the root of the problem. After multiple blood tests Payton was scheduled for a muscle biopsy and a spinal tap by one of U of M’s top pediatric neurosurgeons. Eight weeks came and went and then I received the call at work. The neurologist informed me Payton suffered from Mitochondrial Disease, Complex 1 & 4. Feeling naïve and ignorant I googled this condition and began to feel that life as I knew it was about to change drastically. After allowing the news to digest and informing our family members of the latest findings we were sent to U of M once again to do a question and answer session with our beloved neurologist. 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 thought. Since the disease itself is relatively new and research has been limited due to awareness and lack of funds our questions still go unanswered. We have no idea what lies in the future for us, but are learning that more children are affected by this horrendous disease. Parents are left with no answers and constantly grasping for hope. With Mito affecting the body as a whole it can attack any organ or working system within the body, developmentally or physically. Life expectancy for these children can be very bleak. Since research is slim we are unable to be given any kind of road map that Mito will take on our baby girl. Payton is considered to be severely, multiply impaired. She can't walk, she can't speak, and she can't chew her own food. Every little thing we take for granted is a huge hurdle for Payton to overcome. Instead of dwelling on the negative aspects we work even that much harder to help Payton live her life to the absolute fullest. There is no treatment offered for her beyond an intense 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. Until then we will continue to pray and tell anyone we can until were blue in the face about Mitochondrial Disease.