Vibrant, captivating, resilient. That’s our Zoe. She shrieks with joy in the bath and pool, enjoys interactive children’s books, and loves dancing to music. Her favorite food is, oddly enough, eggplant. She’ll charm you into giving her your watch and then offer to share it with you (or others) out of the kindness of her heart. She gives the best hugs and her giggles are infectious. It’s hard to believe she’s almost three.

At five months old, a day after we returned from our first family trip with friends to Yosemite, Zoe had a long seizure after a warm bath. Paramedics rushed her while she was still seizing to UCSF Mission Bay Children’s Hospital where test after test – CT scan, spinal tap, rapid MRI, overnight EEG – came back negative. After three days, we left the hospital with rescue medication in case she had another seizure and hope that we’d never return. Surely whatever caused this seizure was a one-time occurrence. But a second seizure two weeks later led to genetic testing which confirmed an SCN1A gene mutation and a Dravet syndrome diagnosis, a rare disease with a devastating combination of difficult-to-suppress seizures and lifelong cognitive and mobility challenges. We were heartbroken, and back at the hospital more times in the first year of Zoe’s life than most see in a lifetime. That Thanksgiving, instead of gathering with family to give thanks, we spent the night at the hospital after Zoe had an hour-long seizure that took three rounds of intervention to finally stop.

Before the diagnosis and for months after the diagnosis, Zoe surpassed developmental milestones with ease. She cooed, babbled, rolled over, sat up, crawled, and cruised, all with a smile on her face. These firsts were exciting to us as new parents, but her development eventually slowed down to the point of significant delay. At almost three years, Zoe is still working on walking independently with AFOs (leg braces) and primarily uses sounds and gestures to communicate. Her cognitive and motor skills are about a year-and-a-half behind her peers and she receives physical, occupational, and speech therapy weekly. But Zoe is undeterred by her challenges. She bounces right back after most seizures and she will cheerfully chase after other kids at the park with her wobbly walk and creatively communicate with her own version of sign language.

For Zoe, Dravet is just part of her life. But for us, it changed everything. For months after the diagnosis, we didn’t leave our neighborhood in San Francisco for fear that Zoe would have a seizure requiring multiple lines of intervention that only a children’s hospital equipped with a pediatric ICU and epilepsy specialists could provide. Figuring out the right dosing of medication requires constantly balancing the frequency and duration of seizures with her quality of life. Zoe takes a cocktail of anti-seizure medications three times a day, all of which come with meaningful side effects. There have been stretches when she has had fewer seizures at the cost of being heavily sedated, unable to keep her head up and devoid of her usual spark of curiosity and joy. Activities that other families take for granted can be challenging or impossible. With heat and innocuous childhood illnesses being triggers for Zoe’s seizures, we’ve turned down invitations to birthday celebrations, family holiday reunions, and trips with friends. We’ve taken steps back in our careers to put our daughter’s health first. We’ve grieved the life that we thought we would have as a family. And while we are blessed with supportive and loving family and friends from afar, the isolation and constant vigilance takes a heavy toll.

Zoe has remarkable resilience that inspires us and gives us hope. We are so grateful for the work of the Dravet Syndrome Foundation, connecting families impacted by this devastating disease, providing resources to navigate life with Dravet, and, most importantly, advocating and funding research for a cure. Progress today means a better life for kids like Zoe now and tomorrow. And as our family has already experienced, every improvement in diagnosis and treatment helps. If you are moved – and able – to support Zoe and so many others, we gratefully welcome you to donate to the Dravet Syndrome Foundation.