The journey with epilepsy is often nonlinear and pervasive. Ryan’s journey is no different.
The Epilepsy Foundation of Minnesota is there so no one journeys alone. Help increase access to resources, connection, and community for individuals and families experiencing seizure disorders and epilepsy.
As a child, Ryan lived with a tonic-clonic seizure disorder that required rescue medication. His uncontrolled seizures in childhood ultimately led to a coma. Ryan’s parents fought alongside him every step of the way – helping Ryan relearn basic skills like walking and talking.
Now, as a parent, Ryan and his wife Jinette, journey alongside their children, two of whom live with the same seizure disorder as Ryan.
Read below for all the ways EFMN works to ensure we are there for every family and every individual on their journey with epilepsy.
Ryan's Journey
When asked about his epilepsy journey, Ryan is quick to acknowledge that “in a lot of ways, it’s my parents’ story.” His uncontrolled seizures in childhood ultimately lead to a coma. Ryan’s parents carried the weight of watching their child fight through a comatose state. Through his recovery, his parents continued fighting, doing all they could to ensure their eight-year-old son relearned basic skills like walking and talking.
Ryan’s teenage years were seizure-free, but after a breakthrough seizure his first year out of college, he feared losing his license meant unemployment. Not understanding how his childhood seizures could come back so suddenly, he struggled with feelings of depression and self-isolation.
But Ryan considers himself lucky because he joined the Adults with Epilepsy Connect Group at the Epilepsy Foundation of Minnesota (EFMN). Donor-supported connect groups provide an easy way to meet people affected by epilepsy and to share experiences in a safe and supportive environment.
When Ryan joined the connect group, he met other adults living with epilepsy. Hearing from others created a sense of connection and belonging, which alleviated feelings of isolation and helped him regain confidence and perspective.
Sonia and Emerick's Journey
A few years after Ryan joined the connect group, he and his wife Jinette welcomed their first daughter, Sonia. Ryan remembers the exact moment he realized his daughter may be having a seizure, “she was being so unlike herself, and all I can remember is how frustrated I was with her…until I realized something might actually be wrong.”
When they brought Sonia to the hospital, Ryan felt like a switch flipped. The life they had before was changed in an instant. Ryan remembers there were times when it felt like Sonia was in the ER every week, and on two different occasions Sonia had to be airlifted to a different hospital.
Sonia’s journey was similar to Ryan’s childhood seizures: She needed rescue medication to come out of her seizures and struggled with intense side effects from medication. For Ryan and Jinette, watching Sonia experience really intense and scary side effects was, “extremely challenging to see as a parent. You feel like you’re doing more harm than good.”
But EFMN was there through it all.
Through Sonia’s journey Ryan and Jinette remain connected with EFMN by attending the United in Epilepsy walks.
The walks are held in several locations throughout Minnesota. Their purpose is to build strong community networks and partnerships between the epilepsy community and those working to serve the epilepsy community.
Because Ryan and Jinette joined the walks, they managed to tap into a strong network of professionals that helped them access the medication needed when their youngest son at the time, Emerick, received his epilepsy diagnosis. Thankfully, because of this connection, Emerick skipped the harmful side effects and found the medication that worked for him, without trial and error.
Jinette's Journey as a Caregiver
“The real rock of the family and hero in this story is not really me, Sonia, or Emerick, but it’s my wife Jinette. She’s the one that dealt with it all.”
As a parent to a child with epilepsy, Ryan knows the journey is long, unpredictable, and scary. But his wife knows the journey of a caregiver more intimately than anyone.
Being a caregiver is emotionally, mentally, and physically taxing. It’s hard on your mental health, but for the Lais family, “Jinette recognized this early and started taking the right steps to address her mental health and had the courage to bring it up to me as well – because I was not willing to [acknowledge it] at the time.”
At EFMN, we know the journey impacts everyone. Epilepsy and seizures disorders are nonlinear and often pervasive. As a caretaker, parent, or loved-one, impacted by epilepsy may take a toll on your mental health and wellbeing. As Ryan describes, “you can’t take care of others if you don’t take care of yourself. Find your Jinette–that rock in your life to help you.”
That’s why EFMN is here for the journey, for everyone impacted by epilepsy and seizure disorders. If you’re a caregiver or loved-one of someone living with epilepsy or a seizure disorder, and you’re looking for resources, connect with our one-on-one services, because no one journeys through epilepsy alone.
For Ryan and his family, the importance of having EFMN throughout their journey meant they never had to face challenges alone. They found community, connection, access to resources, and support when they needed it most.
