My Family and the Mitochondrial Research Guild
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
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
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
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.