As a state employee for the Minnesota Department of Employment and Economic Development (DEED), Vocational Rehabilitation Services (VRS), he helps high school students with disabilities transition to secondary education or into the workforce. As a member of the Epilepsy Foundation of Minnesota Regional Advisory Committee (RAC) in southern Minnesota, he supports families struggling with epilepsy and furthers the EFMN mission.
But he’s also a father to four children under the age of six, one of which has epilepsy. Just like him.
Ryan Lais was diagnosed with epilepsy at just three years old. His daughter Sonia, almost six now, was diagnosed at four years old.
“I was devastated when Sonia was diagnosed. I was suddenly reliving my own nightmare, but worse yet, I was witnessing my own child experiencing it,” says Ryan.
Having faced his own battle with epilepsy as a child, Ryan has a different perspective than other parents. As Sonia began to age, and the seizures continued, the similarities between father and daughter continued to show.
“My childhood, in many ways, mirrored the struggles Sonia has experienced. Both of us have experienced numerous failed medications with wicked side effects. We’ve had to carry a rescue medication with us, had many ER visits, and been airlifted a couple times,” says Ryan.
Ryan did find seizure control and was even able to go medication free, for a time. But in 2012, after living most of his adult life seizure and medication-free, they returned.
“As an adult I had a totally different set of anxieties. I was terrified by the idea of driving, as well as the prospect of not being able to drive, if my seizures weren’t controlled. My anxiety and mental health took a turn and I needed an outlet to heal. EFMN’s Connect Groups offered that outlet. The meetings helped me connect with others and witness families thriving in much tougher situations. Over time my mental health improved and I saw my role as instilling hope in families struggling with epilepsy,” says Ryan.
Stepping into this role resulted in Ryan joining the southern Minnesota RAC and playing a part in not just supporting local families, but helping coordinate the annual Walk, and fundraising through the Lais family team, Sonia’s Superheroes.
“Since Sonia’s diagnosis, the Walk has been a way to celebrate Sonia and her resilience. She is an inspiration. Friends, family, and the community want to support her, donate to our team, and even walk with us as a way to show their support,” says Ryan.
Sonia’s most recent victories came from finding a rescue medication that works and reduces her trips to the hospital, as well as switching to Epidiolex to better control her seizures. Since January, Sonia’s only had two seizures. By this time last year, she was up to 13.
The pain of watching your child go through the same struggles as you is hard. It can be especially difficult with something as unpredictable as epilepsy. Yet, it does bring with it a different perspective on life and family.
“All that being said, the real impact on my family is that we tend to cherish the good times, appreciate life more, and not stress about the small stuff,” says Ryan.