Reagan’s journey began at just 2 years old when she was diagnosed with both epilepsy and cerebral palsy following three unprovoked seizures. This dual diagnosis marked the start of a challenging path for Reagan and her family. Initially followed by Dr. Reid Nichols for cerebral palsy, the family faced difficulties in finding the right neurologist for her epilepsy. Dr. Nichols played a pivotal role in connecting Reagan’s family with the supportive neurology care team at Nemours Children’s Hospital, Delaware.
One of the most significant turning points in Reagan’s treatment was the introduction of the medical ketogenic diet. While initially demanding, this diet offered Reagan a year of seizure freedom and allowed her to wean off one of her medications. She eventually transitioned off the diet in late 2022 after losing seizure control. “We are firm believers in the diet and the way it is administered. Epilepsy consumed our lives daily as a family; the diet, while initially hard, allowed us to breathe and helped wean Reagan from one medication,” says Erin, Reagan’s mom.
Nemours Children’s became more than a medical center for Reagan; it became a second home. Erin shares how Reagan and her family cherish her medical team: “We love that all doctors, nurses, therapists, and front desk staff know us. Reagan has such fond memories of being in-patient for the ketogenic diet intake; she loved visiting the Kids Club and making keto food in the kitchen with dietitian Robin Nuse. And while Reagan’s most recent extended EEG stay was much more challenging, the child life team was incredible, sending therapy dogs in daily to ease Reagan’s anxiety.” The familiarity and warmth of the associates at Nemours provided a comforting environment for Reagan and her family.
“This past summer, Reagan attended the Epilepsy Foundation of Eastern Pennsylvania’s Camp Achieve, per the advice of Dr. Tran. We felt comforted knowing that Jen Hubbard, Reagan’s Neuro nurse practitioner, was on staff! Reagan spends much of her time attending physical and occupational therapy after school, where the therapists make the activities fun! We credit so much of Reagan’s physical growth to this incredible team! Additionally, we appreciate how Dr. Tran approaches treatment with quality of life in mind and how that looks different for each patient. She spends quality time with us at each appointment, ensuring we are on the same page and on the right path.” These connections and thoughtful care at Nemours have played a significant role in Reagan’s ongoing journey.
Reagan’s journey extends beyond her medical treatments. Each year her family organizes Reagan’s Run, a 5K charity event that has grown in the three years since it started, drawing over 400 participants and raising just shy of $70,000. This event not only supports their cause but also fosters a sense of community and solidarity among other families facing similar challenges. All funds raised since Reagan’s Run began in 2021 have been donated to CURE Epilepsy, an organization that promotes and funds patient-focused research with a mission to find a cure for epilepsy. This year, with the formation of the Rea of Hope for a Cure Foundation, they will donate to CURE, the Epilepsy Foundation of Eastern Pennsylvania (EFEPA), and Nemours, and provide support for families in their community. This year’s Reagan’s Run will be held on Sunday, September 15, 2024, at Wilson Farm Park in Wayne, PA.
In addition to Reagan and her family’s efforts in incorporating Rea of Hope for a Cure Foundation, Reagan’s advocacy extends through her extracurricular activities. “Reagan spends her time outside school and therapy cheerleading (her cheer squad went to Pop Warner Nationals in Orlando, Florida this past December), advocating for herself and others living with epilepsy. She does this by speaking to her peers each year about what life is like for her and providing facts about epilepsy and seizure first aid cards to school staff and kids.” Despite the ups and downs, Reagan remains positive and is dedicated to sharing her story. She enjoys participating in initiatives like the Kids Crew and EFEPA’s Camp Achieve, where she loves spreading awareness through lemonade stands and the purple painting project.
Reagan and her family emphasize the importance of finding support and connecting with others on a similar journey. “From a parent’s perspective, I would advise you to find other families walking a similar path; connecting to those who understand makes the journey feel less lonely.” Reagan shares her perspective: “Living with epilepsy (and CP) is hard, but I try to still have fun, stay positive, and live the best life possible!”
Reagan’s story highlights the importance of resilience, community, staying positive, and finding hope. Through the support of Nemours and their family’s own advocacy efforts, Reagan and her family continue to inspire and uplift others facing similar challenges.
Join Us for Reagan’s Run
Reagan’s Run is an annual 5K charity event that has grown into a vibrant community gathering, raising funds to support epilepsy research and providing hope to families facing similar challenges. This year, Reagan’s Run will take place on Sunday, September 15, 2024, at Wilson Farm Park in Wayne, PA.
To register for the race or learn more about how you can participate, please visit the Reagan’s Run registration page.
Learn More About the Rea of Hope for a Cure Foundation
Reagan’s advocacy doesn’t stop at her run. This year, her family founded the Rea of Hope for a Cure Foundation to further their mission of supporting epilepsy research and helping families in need.
To find out more about the foundation’s work and how you can get involved, please visit Rea of Hope for a Cure Foundation.
