Will’s Story

Will was born on June 24, 2009, a healthy boy at 8lbs 9oz.  He was a real challenge the first several months of his life.  At nine weeks, he started sleeping through the night consistently.  However, no matter how well he was sleeping through the night, we could not get him to sleep well during the day.  On almost all occasions, he would wake up from his naps screaming at the top of his lungs.  His naps would only last about 20-30 minutes.

 

When he was five and a half months of age, our life as we knew it, took a detour.  My husband was holding Will at church Sunday morning.  He nudged me with a concerned look on his face.  I looked at Will, and his body was completely limp with his head back and his eyes open.  It looked as if he was sleeping with his eyes wide open.  He seemed to be okay afterward, and we didn’t think much of it on the drive home from church.

 

When we got home from church, Will was laying on the floor with some toys when he began having a seizure.  When the paramedics arrived, Will was still seizing.  They worked on him for a few minutes, took his clothes off, and carried him out to the ambulance.  Will’s seizure lasted about twenty minutes.

 

After three days in the hospital, tons of  bloodwork, a CT scan, a lumbar puncture, and an EEG, we received a diagnosis of a febrile seizure.  Will had just contracted a virus, and he did have a low-grade fever.  We were told it could happen again.

 

Three weeks later, a day after Will received his six month vaccines, he had his second seizure.  Will was taken to the ER, where his seizure was stopped with medication after twenty minutes.

 

At this point, we knew something had to be wrong.  Will was put on phenobarbital, and we were told to make an appointment with a pediatric neurologist.  A couple weeks before our appointment, I was telling a friend of ours about Will.  He said we should call and talk to his neighbor because his neighbor’s son has seizures.  I decided to call our friend’s neighbor a few days later.  They told me all the details about their son.  As I was talking to them, I realized that their son’s characteristics sounded similar to Will’s.  They said their son has a condition called Dravet syndrome.

 

I did some research, and I started to get very concerned.  Everything I read sounded extremely serious and very similar to Will’s condition.  When we eventually saw the neurologist, she examined Will and decided to keep him on the Phenobarbital.  She also prescribed Diastat for seizures lasting over five minutes.  After her examination, she didn’t seem very concerned.  I asked her about Dravet syndrome.  She said Dravet syndrome is very rare, but if we preferred, she could order the blood work to test for the gene associated with Dravet Syndrome.  We decided to go through with it.

 

The results of the test took about three to four weeks.  During this period of time, Will had a few more seizures.  Fortunately, these were not near as serious as his first two.  They stopped on their own after a few minutes.

 

Our neurologist’s nurse called and gave us the news that our son had tested positive for the gene associated with Dravet Syndrome.  Until a few weeks prior, and besides some sleeping issues, our baby was completely healthy.  The next few days were dark for us.  The future that we had planned for our family was now unknown.  We questioned if we could handle this.

 

Eventually, we accepted our path, and we decided that we have to be strong for Will.  I started looking around for support groups.  I came across the Dravet Syndrome Foundation.  I was inspired by their mission:  to promote awareness and to raise vital funds for research.  It was great to talk to others affected by this rare condition.

 

Will’s life is different from other children.  He continues to have seizures.  After three seizures in the bathtub, we don’t give him traditional baths anymore.  We give him a sponge bath several times a week, and we wash his hair in the sink.  Because of the risk of triggering a seizure, we can’t take him out on a bright warm sunny day.  We don’t travel.  We can’t leave him with just anyone.  This has been a learning experience for all of us.

 

We consider ourselves lucky though.  It is very unusual for a child this young to have genetic testing for Dravet Syndrome.  We thank Will’s neurologist for being open to our concerns.  Having a diagnosis this early can help us get the right treatments and therapies at a very critical period of development.  We are thankful for this perfect little guy, for his loving big sister, and for a Faith that guides us along this journey.