Confidently proclaiming she could bear the moniker “epilepsy girl” without a worry, 17-year-old Sofi Quintana captivates attention with her myriad accomplishments, defying the years spent battling seizures at home, school, and in hospitals. At one point, she was even deemed a candidate for homebound care and homeschooling due to the challenges posed by her epilepsy.
Sofi’s presence radiates strength. Her infectious grin and tenacious spirit paint a portrait of resilience, especially when one examines the details of her epilepsy journey since the age of 9. Having endured generalized tonic-clonic, absence, and partial seizures, Sofi’s demeanor defies the challenges she’s faced.
Before her affiliation with Epilepsy Alliance Florida, Sofi weathered hospital stays, frequent seizures, medication challenges, unpleasant side effects, and the isolating experience of feeling disconnected among peers. Anticipating a school transfer, she grappled with the fear of judgment from both familiar and unfamiliar faces. Throughout this turbulent period, Stephanie, Sofi’s mother, stood by her side. Stephanie says that Sofi’s luck took a turn for the better when their insurance directed them to Epilepsy Alliance Florida. This begins the tale of Sofi’s triumph – a narrative filled with relief, pride, and transformative change.
Upon joining Epilepsy Alliance Florida, Sofi’s case manager worked together with Sofi’s insurance to secure approval for the costly anti-seizure medication she urgently needed. Beyond medication support, the organization stepped in to provide a holistic approach to Sofi’s well-being.
This approach extended to emotional support from Epilepsy Alliance Florida’s staff psychologist, who offered crucial aid as Sofi navigated the challenges of entering high school. Moreover, Epilepsy Alliance Florida’s involvement reached Sofi’s new school, where her Alliance advocate conducted training sessions for staff on handling seizure emergencies. This proactive measure created a safe space for Sofi, fostering an environment where everyone knew how to respond in case of an emergency. Furthermore, her Alliance advocate collaborated with teachers and administrators to secure academic accommodations to ensure her success.
Sofi’s independence blossomed with the aid of Epilepsy Alliance Florida, allowing her to participate in school activities, sports, and even embark on a four-day school trip to Washington, D.C. The Alliance’s support extended to her acquiring a seizure alert watch through the Josh Provides Foundation, which enhanced her safety. She academically flourished, and even created Club Purple at her school to raise awareness about epilepsy. Most recently, she was nominated for the Miami Herald’s Silver Knight award for outstanding students in the science category.
Beyond her individual accomplishments, Sofi found a supportive community in Epilepsy Alliance Florida – a place where she can connect with other youth living with epilepsy. She has attended Boggy Creek Camp and participated in epilepsy support groups for teens. Additionally, Sofi has become an active member of the organization. As a Youth Advocacy Council member, she participated in Epilepsy Alliance Florida’s Capitol Day in Tallahassee during the recent legislative session. She had the opportunity to meet with legislators and attended the organization’s “Red + Blue = Purple” reception to recognize state leaders who have been supportive of Epilepsy Alliance Florida and epilepsy sufferers across Florida.
Showcasing her compassion and commitment to supporting others facing similar challenges, Sofi also founded Project Teen to visit teenagers with epilepsy during extended EEG tests and hospital stays. With her “Purple Blog” and involvement in advocacy trips, Sofi’s journey exemplifies her commitment.
Sofi has shaped her identity as an agent of positive change for those suffering from epilepsy. Her future plans include raising awareness about epilepsy and spreading compassion to others facing similar challenges. Her actions consistently reflect this purpose, a testament to the profound impact of the support she’s received from the Alliance. According to Sofi’s mother, “None of Sofi’s accomplishments would have been possible without Epilepsy Alliance Florida.”
Epilepsy Alliance Florida makes transformative change possible for individuals, like Sofi, through a team of dedicated case managers working on meeting client needs and providing comprehensive services. This, in turn, is made possible by vital funding from the Department of Health’s Epilepsy Services Program. Epilepsy Alliance Florida is committed to advancing epilepsy education and efforts to destigmatize the disease by working together with allies and stakeholders across the state.
At the end of the day, Sofi doesn’t let herself be defined by her disease. She is too busy paving the way for a future where she triumphs over epilepsy.
