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Meet Sam: 2021 Family Advocacy Week Champion

Sam is participating in Speak Now for Kids’ Family Advocacy Week from June 13-18, 2021. Through this event, Sam and his family will discuss his health journey, Children’s Minnesota’s role in providing Sam with necessary health care services, and why the public and our elected officials must invest in the future of kids like Sam.

When Sam was 19 months old, he was treated at the University of Iowa Hospital for epileptic seizures. The family relocated to Minneapolis soon after – in part to be closer to the neuroscience group at Children’s Minnesota.

Children’s Minnesota is important to our family because kids need a different kind of care than they can get in an adult hospital,” says Stacey, Sam’s mother. “We count on Children’s Minnesota for Sam’s epileptic care, but also for sedated dental procedures and blood draws.”

Sam’s epileptic condition was unusual and he did not respond well to any of the treatments. It took two and a half years before doctors found a medication that helped. In addition to epileptic episodes, Sam was also prone to lung infections and hospitalized several times for pneumonia.  

With new medication and milder seizures, Sam learned to walk and regained some independent skills he’d lost. At 11 years old, the specialists at Children’s Minnesota officially diagnosed him with SCN2A related epilepsy, a rare genetic chromosome disorder associated with epilepsy, autism and other neurological issues. 

Sam is now 15 years old and doing relatively well. His seizures are controlled with medication, and he continues to see five specialists at Children’s Minnesota. 

“Sam’s world really closed down with COVID-19,” says Stacey. “Sam is not able to mask, often puts his hands in his mouth, and has other medical history that makes him susceptible to the coronavirus.” 

Sam has been home-schooled since the pandemic started, and his physical, occupational and speech therapy sessions have been put on hold. Sam isn’t eligible for the vaccine yet, so his experience in the community is limited to hiking with family and other outdoor activities.


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