Meet LIly


Lily is a bubbly, happy, smart 10.5 year old girl. She's in 5th grade at ASU Prep Digital. When she was a few days shy of her first birthday, she had her first epileptic seizures. After many sleepless nights and long days we found a combination of medications that controlled her seizures. Lily managed to stay seizure free for over 6 years while moving from Hawaii to Colorado to California and now Arizona. When she was in third grade, she was weaned off her medications. Unfortunately, Lily began to gradually have small headaches. The intensity and frequency increased over a few months until one day she had a migraine so bad she was vomiting, couldn't talk normally, didn't know where she was and who we were and somehow could not walk on her own.  Then we found out that she had been having seizures again. We learned that her epilepsy had returned and the migraines she was now suffering from were causing her to have ataxia- or severe imbalance. Lily did walk on her own again but still often uses a walker or wheelchair for safety. Lily has different types of seizures and still continues to suffer from frequent pain. She lives with a low level of pain every day and is in the hospital approximately every 4 to 6 weeks for iv medications that typically need to be given via picc lines. Lily takes six different medications every day not including her emergent medications to control her migraines and seizures. She currently does physical and occupational therapy because her seizures caused her to lose a lot of her muscle tone, coordination, and strength. Through it all, Lily loves to play and is the toughest kid you'll ever meet. She's always smiling and loves to be around her large extended family of aunts, cousins, uncles and grandparents. Lily currently lives with her mom, who is a single parent, her 4 siblings, and two rambunctious cats.