Payton's Story

Payton was three weeks old when she began having seizures. At first the seizures lasted 10 to 20 seconds, but as she grew so did the seizures.The seizures increased to 1 to 4 minutes in length and occurred approximately 2 to 5 times a day. After eight months of chronic seizures, we were sent to the University of Michigan to a pediatric neurologist. Payton was admitted and underwent a 72 hour EEG. At that time we were told Payton had atypical symptoms of a condition called Infantile Spasms. We were given two treatment options. Our first option was to wait and see if Payton's seizures became more characteristic of Infantile Spasms. Our second option was to be proactive and treat the seizures with an extremely harsh steroid called ACTH. We chose the second option; this meant for 10 weeks we had to administer daily shots of ACTH into Payton's little thigh. Prior to treatment, Payton smiled often and rarely cried. Overall, she was a happy, beautiful baby. After the steroid treatment she became a bloated, unemotional baby. She never cried when we gave her the shots, and she no longer smiled. She also lost most of the gross motor skills she worked so hard to develop. The one upside of the treatment was that by 11 months of age Payton's seizures had subsided. After the steroid treatment was completed, Payton began to show some emotions. However, she still was not the same.

After treating Payton's seizures, the pediatric neurologist informed us that it was time to find the root of her problems. Payton underwent multiple blood tests, a muscle biopsy, and a spinal tap. Eight long weeks later we were informed that Payton suffered from Mitochondrial Disease, Complex 1 and 4. Feeling naïve, I researched this disease and began to feel as if the life I knew was about to change drastically. I discovered that Mitochondrial Disease is a relatively new disease and that research on its cause and treatment is limited due to a lack of awareness and funding. Our questions about Mitochondrial Disease still go unanswered.

We have no idea what lies in our future, but we have learned that more and more children are affected by this horrendous disease. Parents of children with Mitochondrial Disease are left with no answers and constantly grasping for hope. Because mitochondria effects the entire body, Mitochondrial Disease can attack any organ or working system within the body causing devastating developmental and/or physical delays. Life expectancy of children with Mitochondrial Disease can be very bleak. Payton is considered to be severely, multiply impaired. She does not walk or speak, and she is unable to chew food on her own. Little things we take for granted are huge hurdles for Payton. However, as a family we have decided not to dwell on the negative aspects of this disease, but rather work to help Payton live her life to the absolute fullest.

There are no treatments offered to Payton beyond an intense dose of vitamins. We make every attempt possible to shield her already damaged immune system from illness and we advocate for Payton so that she may receive the best education possible. We pray that one day our little girl will walk, say “dada” or “mama”, or even just hold her own bottle. Until then, we will continue to pray and inform as many people possible about the devastating effects of Mitochondrial Disease.

-Michelle DeWitt, Payton's loving Motherbout the devastating effects of Mitochondrial Disease.

-Michelle DeWitt, Payton's loving Mother