Category: Thriving with Epilepsy

Cody Semrow is only nine years old, but his journey with epilepsy includes a misread MRI, multiple medication changes, unpredictable side effects, and, of course, seizures. However, it also includes a special friendship between Cody and his favorite musician, Jason Gray. This past summer the Semrow family organized a benefit

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

Laura Roloff was diagnosed with epilepsy just one year ago. After meeting with doctors and learning how her life was about to change, she wasn’t sure how to tell her kids. Before she got that chance, Laura had a seizure at home, and her 11-year-old son Keyan was the only

Danielle’s Story Danielle Ehresmann started having seizures at two years old but wasn’t officially diagnosed with epilepsy until she was five. Her two sisters were also diagnosed at five, meaning the three of them, all triplets, had the same three types of seizures. As she grew older her sisters’ seizures

Team Leah is returning for their sixth Rise Above Seizures Walk and may just have their largest walk team yet. They all come together to support Leah, an 8-year-old with epilepsy who wants to be a chef, but in the meantime plays basketball, rides her bike with friends, and of course does some cooking and baking.

Change can come at any point in life, and for Bob Greer, there have been many moments of unexpected change. Shortly after getting married Bob was drafted into the Army, and more recently he was diagnosed with epilepsy at the age of 73. With no known cause for his recent seizures and diagnosis, Bob used EFMN’s Information Services and Connect Groups to learn about treatments and how others manage their epilepsy.

Thomas and Anna Putnam share a bond unlike any other brother and sister. They may just be the only non-twin siblings to have an SCN8A epilepsy diagnosis in the world. This rare form of epilepsy is due to a sodium channel disorder and affects the 14-year-old Thomas and 11-year-old Anna in similar ways.

Mara LeRoy is always looking for her next activity. She recently learned about indoor skydiving, which naturally she had to try, and just finished up her eighth year of adapted downhill skiing. She’s eager now for the snow to back off and plans to attend the Epilepsy Foundation of Minnesota’s (EFMN) Family Camp for the third consecutive year this July. Mara has had epilepsy her whole life, but because she uses a wheelchair to get around she hasn’t been able to attend Camp OZ. She has found Family Camp to be a fun day camp that offers some great activities.

The message Shar McPherson shares with others is that if you want to create change, you need to speak up. Whether it’s to raise awareness, receive help, or push for legislative policies that improve the lives of people with epilepsy, Shar is a vocal advocate and invites others to join her.

Being diagnosed with a rare form of epilepsy comes with its own unique challenges, but that doesn’t mean you have to go through it alone. Since their daughter Ellis was diagnosed with Doose Syndrome, Erik and Kendra Weiss have used monthly EFMN Connect Groups to meet others who have a child with epilepsy and learn from their experiences.