Florida Father Calls For Change

Rob Holl- Parent Testimony

Florida House Subcommittee - Jan. 2013

In early August of 1987, our oldest daughter Megan, not yet a year old, was slowly regaining consciousness after an eight day medically-induced coma. Each round of a curiously cyclical pattern of waking, stretching, yawning, quietly whining and then falling back asleep seemed to come a little bit closer to the last. Now in a bigger hospital, in a bigger town, another new neurologist described the affect of the three and a half hour seizure that preceded the coma as her brain being wiped clean just like a chalkboard. He went on to express the possibility that someday soon she would regain the skills and developmental milestones we’d soon realize she had lost. The hope contained in that thought slowly dissipated over the weeks and months to follow.

Megan’s seizures started at six months. Status Epilepticus was the first medical phrase we learned as this nightmare unfolded. In those first few years, every seizure involved a 911 call as they would only stop after receiving treatment in the emergency room.  Our lives became all about protecting our baby.  My wife and I developed a tag-team approach that allowed us to work and attend to everything else, while one of us was always with our girl.  Interestingly, our time together became limited but our bond grew significantly stronger.

The seizures continue today. They are not as lengthy now thanks to over twenty-five years of experimenting with almost twenty different anti-epileptic drugs, the ketogenic diet, a Vagus Nerve Stimulator and an emergency supply of rectal valium.  Megan lets us know some illness is approaching by having a cluster of seizures prior to the recognition of any symptoms. Very recently, she has developed seizure activity right before the start of her menstrual cycle.  There have been so many, for so many years, that we have become conditioned to think that they are a part of everyday life.   But before we ever get too complacent there is always some stark reminder that anyone of these ‘routine’ seizures could be fatal.   

Megan doesn’t walk or talk.  She wears a pull-up and requires close supervision and assistance in feeding. She’ll need someone to constantly look out for her the rest of her life. That’s made easier by the fact that she is the happiest person I have ever met.  She is always smiling. I could probably count the number of times she’s cried, in her entire life, on my fingers and toes. First thing in the morning, after watching to see her breathe, I’ll sing some goofy song to wake her. She has this angelic way of often smiling before her eyes open.

The only aspect of getting older that I have learned to enjoy is that you get to watch things change. I just assumed that the Berlin Wall would always be there. Similarly, understanding that marijuana was gradually gaining acceptance, drew me to watch Sanjay Gupta’s CNN special in August 2013.  I was knocked out of my chair by the news that night. That glimmer of hope that faded with 1987, has returned in hearing about little Charlotte Figi.

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