A South Florida teenager refused to let a diagnosis define her.
Instead, she turned her adversity into action, creating a movement to make sure other teens facing the same challenges never feel alone.
For 19-year-old Sofi Quintana, simple items like face wipes, nail kits, and cozy socks are more than just essentials. They’re comfort, connection and a reminder that someone understands.
After being diagnosed with epilepsy herself, Quintana spent her own share of time in hospital rooms. She remembers the uncertainty and isolation. The feeling that no one else quite got it.
So, she decided to change that.
She created Teens Experiencing Epilepsy Now or TEEN, a program dedicated to supporting young people navigating life with seizures.
“The main thing I do is create these care packages, and deliver them to the hospitals, so teens can get them and feel a little bit more comfortable in their hospital stays,” Quintana said. “But in the most recent years it has taken off into this whole advocacy type thing.”
What started as care packages has grown into a powerful platform. Quintana also served on a panel for Purple Day in Disney and traveled to Tallahassee to advocate for training in schools for people who experience seizures.
“It was probably around my sophomore year of high school when I was sent to Tallahassee to advocate for a seizure safety bill,” she said. “Then I finally started to be like, if I accept this and I do something about it, my life can actually be so much better than it is right now.”
That was the turning point.
“Once she started talking, she was like, ‘People are listening to me. I’m going to keep talking,'” Stephanie Quintana, her mother, said. “It was great, I was so proud to see her finally realize that the things she could say, could be important.”
And people are listening. Now she also has a Teen epilepsy blog and offers social media tips and educational material. She has become a local source for people needing advice.
“My favorite is when the parents reach out to me and they’re like, ‘How can I help my daughter” I don’t know what to do'” Quintana said.
Through her advocacy work she found her voice.
“You’re not alone. You can do cool things too,” she said. “Epilepsy doesn’t have to be the thing that totally changes your life. Yes, it could change your life, but it could change your life for the better.”
Sofi Quintana says she has plans to expand her organization in the future and create other TEEN chapters, in more communities, so teens with epilepsy know they are not alone.
