Our son’s name is Caeden.  He was born on May 10th, 2007 and was a healthy baby boy. He was developing on track until he had this first seizure at 9 months old. 

His first seizure occurred on February of 2008. Caeden was playing, and it was as if someone suddenly turned out the lights in his mind.  He stared off in the distance, not responding to his mom’s voice or physical contact.  Then he fell over, and wouldn’t be responsive again for minutes.  

In October of 2008, Caeden had a seizure that lasted well over an hour. At this point in a seizure, the brain is akin to an engine running at redline with no oil. Damage occurs. And for children at this stage of ‘status’, the options are extreme amounts of anti-seizure drugs, or an induced coma. Luckily, the doctors were able to bring him out without inducing a coma. But it was a close call. This prolonged seizure landed Caeden in the ICU for 10 days. During this time, Caeden’s neurologist finally had enough information to diagnose him with Dravet syndrome. Unfortunately, in 2008, Dravet syndrome wasn’t widely known and the doctors couldn’t give us answers on treatment protocols or short and long term impacts. The only thing they could tell us was the life expectancy was 10 years old. That was heart wrenching.

Thanks to a tireless neurologist, Caeden has survived 16 years so far. 16! We have tried almost every anti-epileptic drug combo on the market, including those we had to import from France and Mexico. Because of new treatments that are available, we now have a fair amount of control over his seizures. But we do not have control of the punishment his body and brain have endured from all of the seizures he’s had in the past and all of the medications he is on. Because of this, Caeden is significantly delayed in speech, motor and cognitive reasoning. 

Despite it all, this boy is as innocent and happy as it gets. It’d be amazing to spend a day in his world. He loves hugs, loves meeting people, loves to sing and perform on stage and he loves making people happy. And he helps remind us that there are only a few really important things in life. Caeden will not be like other children, which is okay because of what he is able to bring to the lives of others. Caeden is a fighter and someone to be admired. 

That said, were it not for the growing awareness and research of Dravet syndrome, Caeden’s life may have been cut significantly short, or he may have continued to suffer mis-diagnosis and incorrect treatment for years, as many kids have done. Research and education have been pivotal in recovering Caeden’s quality and length of life. And it is because of the Dravet Syndrome Foundation and it’s families that our children are finding better care and more life options than ever before.

Thank you for reading Caeden’s story!