September 25, 2000 – November 19, 2016
Maggie Grace Lyons loved everyone she met. Though she never spoke a word, she said so much with her beautiful blue eyes. She loved being outside—singing, swinging, and spending time with her family. Maggie adored her stuffed animals, especially her monkey and Pinky Poodle.
Scott and I are the proud parents of three amazing children: Dan, Kate, and Maggie.
Maggie was born in 2000 after what was mostly a typical pregnancy. During an early ultrasound, doctors discovered two cysts on her brain. We were offered additional testing but chose to trust that Maggie was exactly as she was meant to be. At a follow-up ultrasound four weeks later, the cysts had disappeared. We were relieved, and the rest of the pregnancy appeared normal. Maggie was born on September 25, 2000—a healthy baby girl.
Around nine months old, I began to notice Maggie staring off and missing developmental milestones. Our pediatrician reassured us that children develop at their own pace, but I felt something wasn’t right. At 14 months, Maggie had her first grand mal seizure. We spent three days in the hospital with no clear answers. After extensive testing, we were told it may have been a fluke.
Just three days later, Maggie began seizing again, this time in relentless clusters. We rushed back to the hospital. Doctors could not determine the cause. She was placed in a medically induced coma while they searched for answers. MRIs, CT scans, and blood work all came back normal. We were discharged on Christmas Eve with epilepsy medications, but no diagnosis.
For the next nine years, we searched for answers. We visited multiple hospitals, seeking second and third opinions. Finally, when Maggie was 10, my mother came across Lennox-Gastaut Syndrome. We returned to Maggie’s neurologist and requested an evaluation. At last, she was diagnosed.
The diagnosis brought some relief—it gave a name to her seizures and global delays—but it also brought uncertainty. What would her future look like? No one could say. We found a compassionate doctor in Cincinnati who gave us the best advice we could receive: Love Maggie. Love every day you have with her. The future doesn’t need to be known.
He was right.
Maggie changed our family in profound ways. We became stronger, united by love and resilience. It was always “all of us or none of us.” Together, we faced the challenges—uncontrolled seizures, a feeding tube, multiple VNS surgeries, her nonverbal communication, unrealistic academic expectations, and the ongoing fight for proper medical care.
Eventually, we found an incredible team at Nationwide Children’s Hospital. After years of searching, we finally felt supported.
Then, on November 19, 2016, the unexpected happened. Maggie passed away.
We were devastated. Doctors tried to bring her back, but they could not. She was finally at peace—free from seizures.
We miss Maggie every single day.
To honor her life and ensure her spirit continues to shine, we created the Magpie Fund. Our foundation focuses on supporting siblings—the ones who walk alongside their brother or sister with special needs. Through this work, we continue to share Maggie’s joy, her love, and her legacy.
-Shared with love by Maggie’s mom, Kathy