Meet LIly

Lilly.jpg

Diagnosis: Epilepsy

Last Update: 6/7/2022

Lily is a bubbly, happy, smart 10.5-year-old attending 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, her doctors found a combination of medications that controlled her seizures. Lily managed to stay seizure-free for over six years while moving from Hawaii to Colorado, California, and now, residing in Arizona. When she was in 3rd grade, her doctors weaned her off of her medications. Unfortunately, Lily gradually began having minor headaches. The intensity and frequency increased over a few months until a severe migraine caused vomiting, speech, and mobility issues, plus she did not know where she was or recognize her family members. It was then we learned she had been experiencing seizures and that her epilepsy had returned. The migraines 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 continues to suffer from frequent pain. Every day she lives with a low level of pain and is in the hospital approximately every 4 to 6 weeks for IV medications typically given via PICC lines. Lily takes six different medications daily, not including her emergent medications to control her migraines and seizures. She currently does physical and occupational therapy to improve 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 - a single parent, four siblings, and two rambunctious cats

Update: 6/7/2022

Lily continues to participate in weekly physical and occupational therapy appointments, plus various other medical appointments. She visits two neurologists every few months, but we are in contact often. Lily is still experiencing seizures every few days to a few weeks. Her migraines have improved drastically though she still reports daily pain. Within the last year, she was also diagnosed with a hypermobility disorder requiring a visit to a genetics team in November. Unfortunately, since our last update, Lily continues to struggle with her mental health. One of our family goals for Lily is to obtain a service dog which would allow her to gain more independence in school, in the community, and at home. Her service dog would alert her to seizures, fainting/dizzy spells, and hopefully, even help her mental health. Lily continues to be a fighter every day. She never gives up and tackles every obstacle - from seizures, pain, and endurance. We are so proud of her. 

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