I am in the family room with my sons Daniel and Michael at about 4 pm on a Monday night.  Daniel is seven years old at this time and Michael is about 9 months old.  I am cooking, Daniel is watching television and Michael is toddling around.  It appears to be a typical early evening with a family gathered together, relaxing and preparing dinner awaiting the arrival of their father.

In our case however the tension is mounting.  I turn periodically to watch Michael.  Each time I turn around I catch Daniel watching Michael as well.  My heart is beginning to race and every time I hear a bump or a thud I whip around to see what it is.  I can tell that Daniel is getting worried as well by the way his eyes dart back and forth from the T.V. to his brother.  I say to Daniel, "Don't worry.  He seems fine."  I take a deep breath and exhale slowly.  I stir my pasta and then I hear a crash and Daniel saying urgently "Mom, Michael is having a seizure!"

Daniel and I leap into action.  I run to Michael and crouch over him, rolling him to his side and away from the furniture.  I grab the anti-seizure medication and give it to him.  My 7-year-old calls 911 and says, "My baby brother is having a seizure.  We live at 2712 Prairie Avenue.  Please come quickly."  Then he grabs a flashlight and runs outside into the darkness that ordinarily frightens him, to waive the ambulance to our home.

I am awed by Daniel's composure and his courage.

My husband arrives home at the same time as the paramedics, filling my tiny kitchen with their big bodies, their big boots, and their equipment.  I say to my husband, "Honey don't take off your coat.  We're going to the Emergency Room again."   My thoughtful and steadfast neighbors Jane, Pam, and Lynne appear magically 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.  Often on a Monday, but not always, often between 4pm and 7pm, but not always. Things have calmed down a bit since then, although we still call the paramedics from time to time to our home, to the beach, to Michael's preschool, to my mother's house, and even once to the doctor's office.  We carry the emergency seizure medication with us at all times even when we go for a walk around the block.

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 a French neurologist still living in Marseilles, France, when she is not consulting all over the world.  She identified the syndrome and it was named in her honor.  When we received Michael's diagnosis and we discovered that she was still working we sent her an email in French.  We wrote,  "Our son has just been diagnosed with Dravet's Syndrome.  We don't know what to do and we are in despair."  She sent me an email within 24 hours.  She wrote,  "Courage.  I will help your child."

We met with Dr. Dravet shortly thereafter.  She examined Michael and spoke to us at length.  She told us his long-term prognosis was impossible to predict.  He seemed to be doing well, but that could change.  Science knows very little about the brain and even less about epilepsy.  However, Dr. Dravet 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 okay."

Have you heard the expression "Desperation is the enemy of a parent with a sick child?" It is so true.  The grief can be overwhelming, paralyzing.  It can leave you breathless.  It is so hard sometimes to push it away…

Michael is 4 ½ 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 that 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, to a friend's house, or to visit his grandmother.  As for my husband and I, our dreams for Baby Boy De Lara burned to ashes, but new dreams are rising and taking flight, and we see their reflection every day in Michael's sparkling blue eyes.

Have courage.  Don't give up hope.  Your child depends on you to believe in him and tell him that he will be okay.


Julie de Lara
August, 2008