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“I’m strong!” A toddler’s story of grit and grace

“I’m strong!” These are words Lace, a sweet 2-year-old with medically refractory epilepsy, proclaims even on her toughest days.

This included days of falling in the middle of engaging in her favorite activities, like dancing and coloring. Lace was diagnosed with epilepsy in December 2019. She began having atonic drop seizures at daycare, which resulted in several weeks of testing at the hospital along with many medication trials. 

Lace’s seizure frequency increased significantly from a couple a day to 20-30 seizures within 24 hours and even during her sleep. She sometimes required rescue medication and reminders to breathe during her episodes. She was no longer able to do things like walk outside with her friends, participate in dance class, or run around at home without an adult by her side and wearing a helmet to protect her from aggressive falls. 

We were given the option of testing at a different hospital outside New York to assess whether she was a surgical candidate. Lace remained her sweet self, saying “thank you” to the doctors and nurses who regularly stopped in her hospital room, even when they were poking and prodding. At Cleveland Clinic it was determined that surgery was the best option for Lace, as the medications were not working. All the testing pointed to one area of her brain that was not functioning properly, causing her daily seizures. The team agreed unanimously that Lace was a candidate for brain surgery.

On May 29, 2020, Lace underwent surgery to remove the cortical dysplasia on her right frontal lobe. She was so brave and positive, even in the final moments leading up to surgery. She waved goodbye and blew kisses to me and her dad before making the final turn to the operating room. We fought back our tears - she was our reminder to remain strong. She has endured so much and is the still the brightest ray of light to everyone she meets! 

I am thrilled to say that Lace has been seizure free since her surgery. Her cognition, speech, and emotional regulation are improving drastically. She is a true example of what happens when you get back up after each fall and living proof that the power of prayer and positivity leads to amazing results. I am so lucky to have her as my daughter. She pushes me to never give up and to appreciate the little things in life. Her laugh and smile are two things I will never take for granted.

Our goal is to raise hope and awareness for families who receive a diagnosis of epilepsy. Lace is proof that here is hope, even for the most complicated cases. Hearing about other children’s success stories helped us get through this hard time. We hope to do the same for others by sharing Lace’s story. Her battle is ours.

If you fall and feel like it’s hard to get up, hear Lace’s voice reminding you to be strong. You can do hard things, just don’t give up. Learn and grow from challenging times and you will become even stronger!

#LaceStrong #EpilepsyWarrior

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