Community Support Is Important for Caregivers

Sarah's son Edward was diagnosed with epilepsy and she's sharing about the importance of community as a caregiver

By Sarah Reaves , North Carolina

Parent of a Child with Epilepsy

Wednesday, June 28, 2023

I was playing with our son Edward one morning when I noticed his eye twitch. He was 7 months old at the time. It seemed off, so I called our pediatrician. They asked me to film him so they could see but indicated it was probably nothing to worry about. Within three days of the initial eye twitch, Edward began to have seizures, one after another. 

My husband and I took him to the emergency room (ER). Edward had 28 seizures in one hour the next morning while on the EEG monitors. We were given a diagnosis of epilepsy shortly after that. A few months later, we learned that he has a genetic mutation called DEPDC5 which caused his epilepsy. 

Edward is now 2 years old and the strongest little boy we know. We are still trying to find the correct medicine dosage for him. We also work with him to help with developmental delays and more. One of the hardest things for me is the constant unknown for my son. Not knowing how epilepsy will affect him as he gets older or if his seizures be controlled, whether or not he will have certain developmental delays, or will his seizure activity increase are all things I worry about. 

For as scary as the unknowns are, having people around us that love us, encourage us, and our faith continues to give us strength to continue on each day. Edward also has an amazing team of doctors supporting him, and we couldn't go through this journey without them. 
I encourage other parents of children with epilepsy to give themselves grace and ask for help if and when needed. It is okay to need a break, and it is okay to sit in the hard things and feel it. Remember, both you and your family members are strong. You are brave, and you are loved! 
Epilepsy and caring for someone with epilepsy can feel extremely lonely. I want others to know they aren't alone, even when it feels like it. Community is so important, especially in times like these.

Reviewed By: Sara Wyen

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