SAMi Helps Monitor Daughter with Epilepsy.

Stephanie, A Loving Mother & Dedicated Nonprofit Worker, Shares Her Story About How A Neurologist’s Recommendation For SAMi Has Kept Her Daughter Safe From SUDEP

How did you learn about SAMi?

Stephanie: I first heard about SAMi when my daughter Jayla was finally given the diagnosis of epilepsy at 8, despite having many, many seizures starting in infancy. When I brought her to the doctor, they said "No she's fine. It's just an immature nervous system. No worries, she's fine." And I'm like "No! She’s definitely having seizures."

Stephanie: After learning of the disorder, Jayla’s neurologist discussed SUDEP and suggested SAMi based on Jayla’s symptoms. SAMi would be the best monitor for her to keep an eye on Jayla’s seizures and potentially prevent SUDEP.

How has SAMi helped your family?

Stephanie: I felt like I was just a broken record with neurologists until finally getting SAMi. Neurologists kept saying, “Well record things and show me” and I'm like, ‘How do I stay up all night and record on a baby monitor?’

Stephanie: SAMi was a critical piece in empowering my physicians and myself in watching over my little one. He said, you need to get this specific SAMi monitor because it will be the best one for her type of epilepsy, based on her movement. Once we got the monitor, we were able to transition my daughter back into her bed, and my husband back into our bed. It was great having that peace of mind and going back to a normal family routine

Stephanie’s concerns were initially brushed off by doctors. Undeterred, she pushed for genetic testing. Stephanie found out her daughter Jayla has an epilepsy linked neurodevelopmental disorder called CSNK2B. With this diagnosis, she was able to get the direction from the physicians she had hoped for but her journey was far from over.