Epilepsy Awareness Month: Oanh’s Blog Post

purple silence the stigma words brain background - Epilepsy Awareness Month

By Oanh Nguyen

It takes a village to raise a child.

As the parents of a young son with epilepsy, we are humbled by the individuals and organizations who have become a part of our lives and have had a hand in helping raise our child. Our son, Jack, now ten years old, was diagnosed with Lennox-Gastaut Syndrome, a severe form of epilepsy, at the age of four. Soon after Jack was born, he was diagnosed with hydrocephalus (which he has a VP shunt) and schizencephaly and the doctors told us that he would most likely experience seizures. 

We remember asking Jack’s neurologist at that time, Dr. Rothman, what we could do to help Jack lead a life as normal as possible. At that time Dr. Rothman could not provide any definitive outcomes for Jack and he said to us that Jack is incredibly lucky to have three older brothers whom Jack would be able to interact with and grow up together and treat like any other brother. Caring for a son with epilepsy has absolutely been challenging, but as the years pass by we realize just how sage the doctor’s words have been for our family to reflect on as we allow Jack to grow like our other three sons.

Through the Help Me Grow MN program and St. Paul Public Schools (SPPS), Jack received services for occupational, physical, and speech therapy for his developmental delays. We are so grateful for these committed therapists who would visit our home weekly and work with Jack on fine and gross motor skills along with speech and language skills. We remember how overwhelmed we felt during these early years, and we still feel overwhelmed at times now. We felt reassured to have therapists work with us to teach us how to help Jack acquire skills adapted to his needs.      

Jack is currently in his last year at Como Park Elementary School where he has an Individualized Education Plan (IEP) to help with his educational goals. We have been so very fortunate to work with dedicated teachers, therapists, and paraprofessionals within the SPPS community who have supported and encouraged Jack. 

One of the fears we have for Jack is how safe will Jack be at school? Will school staff know what to do when Jack has a seizure? Fortunately, the Epilepsy Foundation of Minnesota has been able to visit Jack’s classrooms and share information on seizures with students and staff so that they know and understand Jack’s epilepsy condition. We want Jack to be welcomed just like any other student at his school, even if he has a seizure disorder that sets him apart from his peers.

Lastly, the road of a parent with a child who has severe epilepsy can be very lonely at times. The gift of connection with other parents who have children with epilepsy and share similar paths we have traveled is immeasurable. We have been blessed with faithful family and friends constantly at our side ready to help.

Epilepsy Foundation of Minnesota appoints Jenna Carter as new Executive Director.