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David's Story

January 26, 2017. Something wasn’t right. David wouldn’t wake up. When I finally picked him up in my arms, his eyes opened slowly, but the look he gave me stopped me cold. He looked at me like he didn’t recognize me at all. Like I was a stranger. I asked him if he was okay, but he didn’t answer. He wouldn’t speak. My heart dropped. When we got to the emergency room parking lot, David couldn’t walk. Doctors considered everything- cat scratch disease, meningitis, encephalitis. Nothing fit. After a week of trying to control the seizures with no success, David was placed into a medically induced coma and life-flighted to Nicklaus Children’s Hospital in Miami. It was there he was diagnosed with FIRES (Febrile Infection-Related Epilepsy Syndrome). He spent his 7th birthday in a medically induced coma. Despite six anticonvulsants and a VNS, David’s seizures persist. He’s been diagnosed with major neurocognitive disorder, which essentially means that at 15 years old David is living with dementia caused by FIRES.

About Miracle

But David is so much more than his diagnosis. His life is a miracle. David is kind and gentle. He loves connecting with people, especially when it comes to his favorite movies and TV shows. He jumps up and down in excitement when someone knows what movie he's talking about. He dreams about becoming a dad one day. He loves to eat his favorite foods, his top choice being stuffed crust cheese pizza and Sprite. To know David is to love David. I want you to know who David is, because David deserves answers. He deserves hope for the future he envisions. He deserves research that can help him and others like him live better, fuller lives. Please consider donating to the NORSE Institute to help fund vital research for patients like David. Your support could bring us one step closer to answers and to a future where no family has to walk this road alone.

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