On Friday, I met with two lovely women, Cristina and Tanya Cabrera, who came in to the office to share memories and stories about their son and brother Luis who passed away almost eighteen years ago from a seizure. He always had a smile on his face, and brought such joy to all who knew him before he passed away at the too young age of 24. They have agreed to share his story in our upcoming Annual Report, in order to make people understand how this disease robs so much from so many of us.
In yesterday’s New York Times, there was a story that I am sure many readers read about Bill O’Brien, the new Coach of the Penn State football program. If you only have a moment to read the very first paragraph, please do so. It describes his son Jack’s life with uncontrollable epilepsy due to a rare brain malformation. Though I am all too aware of how common seizures and epilepsy are, I’m still always stunned. And angry. Especially when I hear stories of daily seizures–epilepsy which so defies our understanding that we just have to accept that a child will awaken every morning with a seizure. The only question is how long it will last, and whether it will require a trip to the ER.
Unacceptable is the nicest word that comes to my mind.
Tomorrow, though, we will be sharing photographs from a great event that took place last Thursday to raise funds to beat this disease. Thanks to the efforts of our devoted friends Jim and Susan Schneider we are closer each day to putting an end to this devastation!