EDGEWATER -- Dirt
chunks kick up into the air and dust clouds rise as two young brothers
race motorcycles at their backyard track.
For the moment, they've
forgotten their battle with epilepsy, their medications and their
doctor's appointments.
After
a round of jumps that smudged dirt around his eyes and up his nose,
8-year-old Robby Duke said flying through the air off a ramp on his
dirt bike is his favorite thing to do.
"When the doctors said 'no
riding,' I still rode."
His
mother, Alicia Kaminski, said it helps him have the freedom every child
should have at his age. With each of her four children diagnosed with
the neurological disorder, the family strives for normality in what
sometimes could be a daunting day filled with worry and visits to
hospitals.
The children do
what other children enjoy doing and more, because life can be short,
said Kaminski, who also has epilepsy. "You have to let them go. You
can't hold them back."
After
having struggled to find the proper medical treatment for her children,
Kaminski said things recently have gotten better for her dirt
bike-racing son, Robby, and her 15-year-old all terrain vehicle-riding
daughter, Lauren. They each had a device surgically implanted in their
chest that sends electronic impulses to a nerve in their neck to
control life-threatening seizures.
They
now have more freedom and security knowing that if they feel a seizure
coming on, an adult nearby can swipe a special magnet over their Vagus
Nerve Stimulation device, known as VNS Therapy. Also referred to as a
"pacemaker for the brain" the device sends extra doses of electricity
through a neck nerve to limit the severity of the seizure or stop it
all together.
A small scar
peeks through Robby and Lauren's shirts, revealing the hockey-puck
sized gadget and they say they barely notice it is there. But when
others do notice, Robby is quick to explain.
"I tell them I have a VNS.
And my two friends, they don't really care," he said.
He
and his 5-year-old brother, Adam Duke, who has a type of autism known
as Asperger's Syndrome, ride their motorcycles as often as they can and
also follow NASCAR racing regularly.
"It's fun and I get more
friends," Robby said about their hobbies.
Their interests also have
led them to meet racing celebrity Rob Finlay.
The boys met him and his
team manager, Steve Cameron, at a competition in Daytona Beach about a
year ago.
"He's
brave and he just wants to have a normal life and it seems that he's
very motivated to do well in his racing," Cameron said about Robby.
TheMooresville,
N.C., based Finlay Motorsports team donated a trailer for the
children's bikes through the Make-A-Wish Foundation, an organization
that grants wishes for children with life-threatening medical
conditions.
"He didn't let the
fact that he had an illness deter him from his goals," Cameron said. "I
think that's why Rob got excited about (him)."
Robby said if he doesn't get
into professional motocross, he will probably become a race car driver,
or maybe do both.
When
people ask how she can let her children be involved in motorsports and
run free through the woods near her New Smyrna Beach home with their
father, Bill Duke, Kaminski replies, "Just live your life. You count
your blessings, not your complaints."
She's
even let her 5-year-old daughter, Devynne Duke, who is Adam's twin,
have a go at the dirt bike. She quickly crashed, dusted herself off and
planned to try it again soon.
"We're an atypical family
with typical wants. We just adapt. We want to be normal and so far we
have," Kaminksi said.
kelly.cuculiansky@news-jrnl.com
