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Stories behind Milo&Me: Sofi

Hi! My name is Sofi, and I'm 16 years old. I've been a part of Milo & Me for a few months now. Sophia and her wonderful organization have changed my life by giving me the opportunity to talk to other teenage girls with epilepsy. I never knew many girls like me, so being able to be part of this has been life-changing. I owe so much to Sophia. She has truly changed my life.

My story started in 3rd grade, and I was eight years old. My mom noticed me doing something weird in my sleep and decided to take me to the ER. It took me about a year to get diagnosed because nobody would believe my mom or me. Eventually, my pediatrician personally sent me to a doctor who diagnosed me with Focal epilepsy with partial seizures. From there, my life changed. I went from a super healthy kid that never even got colds to constantly being in the hospital for MRIs and overnight EEGs. I once even traveled from my home in Florida to Boston because my neurologist wanted a second opinion since my medication was not working. After this experience, I got a new neurologist and was changed to the medication I'm on now (which is showing significant signs so far!). That same year I was given the opportunity to go on a Make-A-Wish trip, which helped improve this terrible year. Before my trip, the doctors experimented with my medication causing me to develop Encephalopathy because of how many seizures I had, so I was non-reactive to stimuli. I was admitted to a hospital and started back on my regular medication, which thankfully stopped my Encephalopathy.

Now that I'm a teenager, epilepsy has affected me in ways that I notice. I suffer from anxiety, struggle with limited independence, my memory makes schoolwork more difficult, and I can't drive (which sucks). On the bright side, I never let epilepsy stand in between me and my dreams. I'm in multiple honor societies in my school, I'm junior class vice president and on my school's varsity cheer team! Having epilepsy has taught me how to stand up for myself. I am a strong advocate with Epilepsy Alliance Florida. I've traveled to my state capital to advocate for a bill for epilepsy education in schools (it passed!), and I started my own Club Purple at my school! Even though epilepsy holds me back, I know I can still achieve my goals if I commit myself. I hope to become a pediatric neurologist to help kids like me when I'm older.

I'm so happy that I found Milo & Me. It makes growing up with epilepsy so much easier. I hope other girls with epilepsy can find this group and will help them as much as it helped me! Bye!

-Sofi <3

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