Abby Ackerman was diagnosed with epilepsy before her first birthday. Her seizures were controlled for several years, but eventually returned. She was having 3-4 seizures a day when she was finally diagnosed with a rare kind of epilepsy at the age of seven. Abby’s family connected with EFMN for support, and have since taken advantage of programming options like Camp Oz, Art Therapy, and Shining Stars.
Through the Ackerman’s involvement with the Shining Stars program they’ve developed strong relationships with EFMN staff and connected with other families in similar circumstances. This has benefited not just Abby, but the entire family.
“As parents we really appreciate the opportunity to do fun events such as bowling, a day at Nickelodeon Universe, etc. with other families who understand the challenges we face as parents of kids with epilepsy. We can all relax, socialize, and have fun knowing we support each other,” says Abby’s parents Shawn and Mariah.
Now 14 years old, Abby has spent five years in the Shining Stars program and shows a type of growth and leadership that’s rare for her age. Her willingness to embrace her epilepsy and speak up for herself when necessary is the reason she was named EFMN’s 2017-2018 Winning Kid.
“Epilepsy to most is a sad and challenging disorder,but to me epilepsy is a gift. As hard as it is to be epileptic, I wouldn’t be who I am today without my epilepsy. It’s challenged me to work harder, speak up for myself, and be more aware. Through EFMN I have made friends, advocated, supported others, used my strengths and learned new ones, overcome my weaknesses, and accepted my epilepsy,” states Abby.
As Winning Kid, Abby has spoken at the annual Shining Stars Celebration and kicked-off the 2017 Twin Cities Rise Above Seizures Walk. This month she’ll travel to Washington D.C. with other Winning Kids from across the country to take part in the National Walk for Epilepsy and advocate for the entire epilepsy community through Teens Speak Up and the Public Policy Institute.
“I feel so grateful that I have this wonderful opportunity to go to Washington D.C. I am most excited to see the White House, Smithsonian National Zoo’s giant pandas, the Holocaust Museum, and other landmarks,” says Abby.
Upon her return from Washington D.C. Abby’s role as Winning Kid will continue; she’ll attend the annual Rise Above Seizures Gala in April, and throw out the first pitch at a Minnesota Twins game with her Shining Stars community cheering from the stands.
“My favorite part of the Shining Stars program is being able to hang out and support others with epilepsy. For families who are thinking of joining, it is very supportive for kids and parents, and kids of all ability levels can meet friends and have fun,” says Abby.