My Family and the Mitochondrial Research Guild

By Sarah

Tell us your story.

My name is Sarah Herczog and I am 15 years old. I am a freshman at Holy Names Academy in Seattle, Wash., and I do dance outside of school and assist my family with the Mitochondrial Research Guild for Children's Hospital. I have a mom, a dad and an 11-year-old sister, Michelle. I go to Children's Hospital and Regional Medical Center in Seattle because I have mitochondrial disease.

When I was in second grade I attended a school called Brighton. Christmas break had just ended and it was my first day back to school. When I woke up that morning, my mom said I had been screaming and throwing things. When we got to school, my mom told the teacher that I was acting strange and that if anything happened, she should call her.

At school I couldn't remember where my seat was, and all the other kids were yelling to tell me where it was; then at snack time I got lost and came back with a sock from the lost and found. That's when the teacher called my parents and I was taken to the doctor's office. The doctors asked me to do simple things like spell my name and tell them who my parents were, neither of which I could do. I was then taken to Children's Hospital in Seattle. The doctors performed tests such as an MRI and an EEG and gave me an IV. They had me spend the night at the hospital and they determined that I had what is called status epilepticus. After explaining to my parents that I had a seizure disorder, they prescribed medicines for me and I went home.

At the beginning of fourth grade, things started to change., in May, I went back to the hospital again for a week-long EEG and then a muscle biopsy to test if there was anything more than seizures going on in my body.

After two months of waiting for the test results, the doctors told my parents that I had mitochondrial disease and that the seizures were just one of the symptoms of the disease.

What does Children's mean to you, your child and your family?

Not many people have heard of mitochondrial disease, even though it is as common as childhood cancer. Mitochondrial disease happens when a defect occurs in the mitochondria organelle, which is the organelle responsible for producing 90% of the body's energy, thus resulting in loss of energy for patients.

My family and I were almost on our way to California to find a mitochondrial disease specialist when we got good news - there was now a doctor in Washington, working at Children's, who was a mitochondrial specialist. We were so happy. The doctor's name is Dr. Russ Saneto and he is one of only 50 specialists in the United States. He helped our family get through a very tough time, and he also diagnosed my younger sister. Dr. Saneto gave us the best medical treatment and introduced us to other families with mitochondrial disease.

In sixth grade things started to look up. We started the Mitochondrial Research Guild. It is a special interest guild involving mitochondrial patient families from Children's Hospital. One of the biggest events of our year is the "Cure for Mito Auction." Over the past three years, we have raised almost $450,000 for Children's Hospital, to be used to raise awareness about this disease, improve medical care for families in the Northwest and to focus on research. All of the families in the guild, including the kids and Dr. Saneto, are working hard to someday find a cure for the disease.

I am now doing great in my first year of high school. I only have to go to the hospital for check-ups once a year now, but even though I am getting older, I still want to go to Children's. From the painted elevators to the welcoming staff, it is definitely the best. My stays at the hospital were always great.