In late spring of 2009, my son Liam and I rode our bikes to Windmill
Park in Batavia, IL. The windmill is an impressive landmark along the Fox River,
perched atop our community's favorite sledding hill.   Liam has
always had an adventurous, impulsive spirit, and as his mother, I lean right into
that fun. When he told me he wanted to walk his bike to the top of the hill and
ride down, I saw no issues with that idea. 
I watched Liam walk up and ride down the hill.  When he got down to bottom, he looked at me
with his eyes darting quickly from side to side, as if he was watching corn
fields pass by, and said, "hold me, mommy! I'm dizzy!" That was our
first seizure; I just was not aware of the impending diagnosis at the time. We
wouldn't know that he was having seizures until a nurse observed this rapid eye
movement, as he was prepping for an MRI to rule out a potential "migraine issue"
that may be causing this nystagmus, and instantly pronounced he was having a seizure.  Later as I sat and watched Liam's eyes dart
back and forth uncontrollably as he failed the "photo whatever" portion
of the sleep-deprived EEG testing, tears streamed down my face as I knew that
the diagnosis of "seizures" was inevitable. I thought that was going
to be the most challenging day of my life as Liam's mom. Little did I know that
the heart-wrenching experience of watching my child powerless against the bright
lights flashing in his eyes was nothing compared to what would come next. Some
of our most challenging days included simple things which denied him childhood
experiences similar to his peers, like having cotton candy at a fair or cake
and ice cream at a birthday party or worrying about how many carbs he "snuck"
at school because we were counting on him not eating carbs to help control the
seizures.   As a parent, our hearts hurt when our kid's heart
breaks.  Asking him to be brave and
politely decline the pizza, the cake, the ice cream, the tube ride behind the
boat while everyone else gets to enjoy is torture.    Medically, our most challenging days have
included horrors that no parent or child should have to experience.  Giving him to the neurosurgeon team as they
implanted a Vagal Nerve Stimulator at the age of 11 or  watching as my 16-year-old son was wheeled on
a gurney down the hall to undergo neurosurgery again, this time for a Responsive
Neuro Stimulation (RNS) are experiences that leave a parent's heart raw.    The
RNS is a miracle device, and while the process was hard, the cost was worth the
reward. This device monitors Liam's seizure activity from two band-aid-like
electrode strips placed along two precisely determined parts of his occipital
lobe. The RNS delivers an exactly timed electrical signal to interrupt and disrupt
the electrical signal created by this exact area of Liam's brain which produces
seizures. The theory is that the electoral signal from the RNS stops the electrical
signal in the brain rendering Liam seizure-free. To date, the RNS day was our
hardest day. I prayed (out loud) over every surgeon, nurse, anesthesiologist,
research director,  and every person
wearing a badge who thought they were a part of my son's medical team. That
day, everyone was going to know that my son rested on the Lord's shoulders, and
He (The Lord) was in charge. Liam's medical team were the extraordinary, talented,
brilliant workers empowered to bring Liam through the surgery so that he could
start the next chapter of his life. Liam is referring to this new start as "CURED."
We call 08/25/2021, the day they turned the RNS on,  his second birthday. We could not be more
thankful for the superior medical care and the partnership in advocacy for Liam's
health that we have received at Luries.

The RNS is new technology being used to help people over the
age of 18 and is now being piloted on children to prevent focal, drug-resistant
(intractable) epilepsy. I am passionate about running to support Cure Epilepsy
to help those like Liam. They have a seizure disorder that is uncontrolled by pharmaceuticals,
diet, chiropractic care, acupuncture, oils, avoiding red die, and all the
homeopathic options which promise to bring seizure control but, in the end, fail
to deliver.  We desperately need research
to support technology to help people like Liam, who don't know life without
seizures. People like Liam, whose brain plays an ongoing game of neurological Russian
roulette and for their families and caretakers, are rendered helpless and
without the ability to protect their children and loved ones from the disastrous
effects of a chronic, intractable seizure disorder.

I am passionate about running to support Cure Epilepsy to help
children like Liam who have a seizure disorder that they refuse to let hold
them back from pursuing their dreams.  I
am passionate about running for Cure Epilepsy to give opportunities to children
that seizures steal: eating cotton candy, enjoying ice cream and cake at a birthday
party, being pulled on a tube behind a boat, knowing what it is like to walk
from a dim car to the bright sunlight without it causing a seizure.

By donating to Cure Epilepsy which is dedicated to research
new technologies to prevent and stop seizures, we offer a future and hope for
all people with seizure disorders and their families and loved ones. This is a
future that seizures threaten to steal. 
By donating to this page, we tell seizures this is where you stop. You
may go no further. This is where technology steps in and gives life, hope, and a
future back to those impacted by a seizure disorder.