At 11:15am on Sunday, November 4th, 2012, Daniel’s world came crashing down. Daniel was the victim of a torturous eleven minute long grand mal seizure in the kitchen of his home. At the time, I was just 18 years old and our parents Danny and Lisa, both Registered Professional Nurses, and I stood by and helplessly watched as he thrashed and writhed on the floor turning the color of death. Daniel was rushed to NSLIJHS Southside Hospital by ambulance where the Emergency Room team provided quality care and transferred him to NSLIJHS Cohen Children’s Hospital Medical Center.
After vigorous diagnostic testing, Daniel was ultimately diagnosed with occipital lobe epilepsy, a life-altering disease without a cause or a cure. The neurologists at the hospital started Daniel on a potent anti-seizure medication and proceeded to advise him how this diagnosis would drastically modify his life. For one, our parents were advised to constantly observe him especially at night. The EEG (brainwave test) showed numerous electrical spikes during sleep indicative of potential seizure activity. Our parents were told to never leave him alone. He was advised that he could not participate in gym at school and could not play any contact sports. Additionally, Daniel was given instructions to never climb higher than three feet to keep him safe in the event of a seizure, to not lock the bathroom or his bedroom door so that our parents could have immediate access to him and that he would not be able to get his driver’s learner’s permit.
Since November 2012, Daniel has had multiple, traumatic seizures. He wakes up everyday fearful of having another seizure. He reports feeling anxious especially when having to attend school because he is worried that he will have a seizure without warning, as is usually the case. His diagnosis has changed his life in more ways than one. Like most typical teenagers, Daniel exerts his independence and was proud of the fact that he is now old enough to stay home alone on occasion. Because of the need for constant observation, Daniel has lost his sense of growing independence. This loss is devastating and depressing to a 15 year old boy. At a time in his life, when most boys his age are looking forward to soon getting a learner’s permit to drive, Daniel struggles with knowing that he will not be driving like his peers and that the independence afforded to his peers has been abruptly stolen from him.
On March 15, 2015, I, Emily Lumley, will be running the NYC Half Marathon with teamFACES to find a cure for epilepsy and seizures. Please help my team and I raise money towards finding a cure for Daniel and many others.
- Stephanie Streek
- Charlie and Cindy Figliozzi
- Dan and Lisa Lumley
- Geri McAndrew
- Donna DeFede
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