Good
morning! I’m
so excited to see all of you here today.
You’re probably here because epilepsy has affected your life or the life
of someone you know. I’m here this
morning with some of my family and friends to walk in honor of my youngest
daughter, Elizabeth. We call her Lizzie.
On Saturday, September 10, 2011, our family was
at a neighborhood festival being held at our church. Lizzie was three months old and was strapped
into the baby carrier on my chest, asleep.
I was helping at one of the booths, doing face painting, when all of a
sudden I felt Lizzie stiffen and jerk. I
looked down and her eyes were rolled back in her head and her little body jerking
rhythmically. It only lasted a few
seconds, but it was terrifying. One of
my friends noticed the look on my face and asked what was wrong. I said, “I think Lizzie just had a
seizure.” I quickly got up from the
table and began to walk inside the building.
My friend went to try to find my husband, and then Lizzie had another
seizure. We left our three other
daughters with friends at the church and quickly drove to the nearest
hospital. There, in the emergency room,
they checked Lizzie out, drew some blood, and started an IV. She had a CAT scan, and when that was
finished, she was loaded into a Children’s Mercy ambulance and taken
downtown.
At
Children’s Mercy, Lizzie was admitted. She
continued to have seizures. This will
sound strange, but I was glad when she had two seizures in the presence of the neurologists,
because then they could see exactly what we were talking about. Over the course
of the next three days, Lizzie had numerous blood draws, two spinal taps, two
EEGs, and an MRI. They wanted to rule
out infection or anything else that might be causing the seizures. I still remember the grave look of concern on
the doctor’s face after the first EEG.
He said, “Her EEG was not good” and proceeded to tell us that Lizzie was
showing a lot of seizure activity. He said
that the kind of seizure activity she was showing was consistent with severe
cognitive and other developmental delays. He said that the brain waves shown on
her EEG looked more like those of a premature infant instead of a three and a
half month old. He said it was likely
her seizures would not be able to be completely controlled by medication. The doctor even mentioned some specific
epileptic syndromes, some of which may limit a patient’s life expectancy. He
repeatedly told us we were facing a long road ahead. Needless to say, when Lizzie was discharged
from the hospital, I was full of worries and concerns. However, we were blessed to have the support
of many, many people in the form of prayers, cards, meals, child care, and
financial assistance with medical bills and prescriptions.
Today,
although the worry is still there in the back of my mind, it has lessened
somewhat because Lizzie is doing very well.
We still don’t know why she has epilepsy. All her genetic tests have come back normal,
and her MRI was normal as well. It
frustrates me a little that they haven’t been able to pinpoint a cause, I guess
because I think if they could nail down the cause then they would know what
they’re dealing with and have a more specific plan of treatment. However, Lizzie’s medications are keeping her
seizures under control, and she has only shown a few minor delays in her
development. Her therapist from
Infant/Toddler Services thinks she’s looking good, and her neurologist is also
very pleased with her progress. For the
most part, Lizzie is a lot like other ten-month-old babies. Although of course I don't
know what her future looks like, right now I am just grateful for who she is
and all she can do.
This Walk is a great way
to bring awareness about epilepsy. The money raised helps the Foundation provide
services for people living with epilepsy, provide awareness programs for proper
seizure recognition and first aid, provide a voice to make sure health care
options for people living with seizures remain strong, and provide much needed
research funding toward better treatment options and ultimately a cure. Thank you for being a part of such an
important cause!
