Ary Rodeghiero hasn’t had a seizure since 2010 thanks to her medication. However, the medication has its side effects, which has caused her to undergo recent EEG testing to determine the best plan going forward. Although seizures don’t affect Ary’s everyday life, epilepsy does.
“We got connected to EFMN by going to the Duluth Connect Groups. Regional Coordinator Lisa Peterson schedules a lot of fun activities and gives such wonderful emotional support. We can have some tough days and Lisa understands,” says Ary’s mom Lynn.
The Connect Groups gave Ary and Lynn an introduction to EFMN services, as it does for many families, but the first event they attended was the Rise Above Seizures Walk in 2011. Ary’s since become involved in a variety of youth events and joined the Shining Stars program, attending both state-wide and regional get-togethers.
“The Shining Stars program events are really enjoyable and allows us to be with others who have epilepsy and their family and friends. We really enjoy the support that is given,” says Lynn.
Support and connection with other families is a large part of the Shining Stars program, but so too is having fun. The annual state-wide celebration is at Nickelodeon Universe and gives free ride wristbands to all Shining Stars. Each spring the organized Minnesota Twins outing brings together Shining Stars to cheer on the EFMN Winning Kid as they throw out the first pitch. Regional social events vary by location, but things like bowling outings and family social events are another way for kids with epilepsy to meet-up throughout the year.
Ary not only enjoys attending events to have fun, but she’s a strong advocate for the Seizure Smart Schools program which educates students and teachers about epilepsy and seizure first aid. Trainings are free for schools, and Ary’s classmates know she’s always willing to talk about epilepsy if they have a question.
“My classmates should know what epilepsy is and how it can affect people, and know what to do if someone has a seizure,” says Ary.
Although it’s been nearly a decade since Ary’s last seizure, she stays involved in youth programs and is a great example of how support, connection, and fun are important for everyone throughout their epilepsy journey.