It's early evening on a Monday. I am cooking; Daniel, 7, is
watching television and our baby, Michael, is toddling around. It
appears to be a typical scene.
In our case, however, the tension is mounting. I turn
periodically to watch Michael. Each time I turn, I catch Daniel
watching Michael, too. My heart races. I can tell Daniel is getting
worried; his eyes dart back and forth from the TV to his brother.
"Don't worry, he seems fine," I tell Daniel.
I take a deep breath and exhale slowly. I stir my pasta and then
I hear a crash. "Mom, Michael is having a seizure!" Daniel
I run to Michael, rolling him to his side and away from the
furniture. I grab the anti-seizure medication. My 7-year-old calls
911 and says, "My baby brother is having a seizure. Please come
quickly." Then he grabs a flashlight and runs outside into the
darkness that ordinarily frightens him to wave the ambulance to our
home. I am awed by his composure and his courage.
My husband arrives at the same time as the paramedics, who fill
my tiny kitchen with their big bodies, their big boots and their
equipment. "Honey, don't take off your coat. We're going to the
emergency room again," I tell him.
My thoughtful and steadfast neighbors, Jane, Pam and Lynne,
magically appear and turn off the stove, put food away and take
Daniel to their homes to feed him dinner and wait with him until my
husband and I return with Michael many hours later.
This was our routine at least once a week for about a year.
Michael's seizures occurred often on a Monday, but not always;
often between 4 and 7 p.m., but not always.
We now have a diagnosis for Michael-Dravet's Syndrome, a severe
and intractable form of epilepsy that has a spectrum of psychomotor
delays from learning disabilities to severe mental retardation. It
is one of three "catastrophic" epilepsies that exist, but perhaps
the most rare.
Dr. Charlotte Dravet is the French neurologist who identified
this epilepsy syndrome. When we received Michael's diagnosis, we
sent her an e-mail in French. "Our son has just been diagnosed with
Dravet's Syndrome. We don't know what to do and we are in
She sent us an e-mail within 24 hours. It said: "Courage. I will
help your child."
When we met with Dr. Dravet, she told us Michael's long-term
prognosis was impossible to predict. Science knows very little
about the brain and even less about epilepsy. However, she did give
us an invaluable piece of advice: "Have courage. Don't give up
hope. Michael depends on you to believe in him and tell him that he
will be OK."
There is an expression, "Desperation is the enemy of a parent
with a sick child." The grief can be overwhelming, paralyzing. It
can leave you breathless. It is so hard sometimes to push it away,
but of course you must pull yourself together to take care of your
Michael is 4½ years old now and doing better. He is a warm and
engaging little boy with a sense of humor and mischief. Although he
is behind his peers, his development continues to progress, defying
the odds. We are lucky and we work hard with him to maximize his
potential. Others we know are not so lucky. Their children cannot
walk, cannot speak and have limited cognitive function. Daniel is
better as well. He is less traumatized, less worried about leaving
Michael to go to school or a friend's house or to visit his
As for my husband and me, our dreams for Baby Boy de Lara were
burned to ashes but new dreams are rising and taking flight, and we
see their reflection every day in Michael's sparkling blue
And always, we remember Dr. Dravet's words: "Have courage. Don't
give up hope. Your child depends on you to believe in him and tell
him that he will be OK."
Julie de Lara is a mom of two living in Evanston.
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