A Rare Epilepsy Disorder Took Their Toddler’s Life. But This Family Focused on Finding Joy

Updated: Mar. 08, 2021

After their newborn was diagnosed with a devastating condition, this family knew they didn't want despair to rule their life—so they focused on finding joy.

01-Chronic-Illness-Took-Their-2-Year-Old-Daughter,-but-This-Family-Is-Spreading-JoyCourtesy Tracy UmezuUntil Tracy Umezu went into preterm labor at 35 weeks, the Minnesota mom and her husband didn’t know their second daughter would have any medical issues. But after an emergency C-section, baby Charlotte was born in critical condition. Umezu saw her daughter for just three minutes before the newborn was whisked away to a higher-level hospital. It would be a full 24 hours before Umezu and her husband would see their baby again. “All that joy you have when you think you’re having a healthy baby was swept out under our feet,” says Umezu.

baby charlotteCourtesy Tracy UmezuAfter weeks of testing, doctors realized Charlotte was having 400 seizures a day. Three months later, the diagnosis came. Charlotte had severe SCN2A, a condition in which the brain can’t use sodium appropriately. Through the chaos, the family realized it was easy to see heartbreak, but looking for joy could keep their spirits up.

Looking for joy

Umezu and her husband had no idea how long they’d have with their youngest daughter, so they started Seize Your Joy to fill her life with as much happiness as possible in the time she had to live. Checking items off a “joy list”—a term the parents preferred to “bucket list”—Charlotte had the chance to finish a marathon (Umezu pushed the stroller), go kayaking, play on Hawaiian beaches, and more. “We wanted Charlotte to experience as much as she possibly could and didn’t want her to have any limitations,” says Umezu. “A lot of families wouldn’t have taken Charlotte to Hawaii, but we did. It was an amazing trip, and we didn’t want her seizures to define her. That’s who she was—she seized—so we didn’t let that stop us from living life with her.”

umezu family in hawaiiCourtesy Tracy UmezuThe family also found surprising joys in the little things that weren’t on the list. For instance, when Charlotte moved from a crib to a big bed, Umezu could finally lie down with her daughter at the hospital. “Joy comes in many forms,” says Umezu. “Even when times are as bad as they can be, you can still find joy in little things, and they keep you going.” She also finds happiness by spreading the feeling, like by paying for coffee for others. (Read these 6 surprising happiness boosts.)

Charlotte passed away on November 29, 2016, but even through despair, her family is devoted to Seize Your Joy. Marking the anniversary of Charlotte’s death, the family will “do a different joy” every month, says Umezu. They’ve taped dollar bills around Target with cards sharing Charlotte’s story, and collected toys for underprivileged children. “It’s kind of become a movement,” says Umezu. “Joy has become [Charlotte’s] legacy. We’ve worked very hard to spread joy in her passing.” (Find joy in these 10 secrets to happiness.)

Spreading happiness

Umezu and her husband have turned Seize Your Joy into a nonprofit as they continue spreading happiness. One of their initiatives is giving out “joy boxes” to children in hospitals and families of parents with cancer. The joy boxes for children include toys tailored to kids—like musical toys for a boy with poor eyesight—along with comfy sheets to make hospital beds feel homier. Little girls usually receive legwarmers, big bows, and nail polish like Charlotte used to wear. “The focus on Charlotte shows that she was a person and not a disease. We loved when the team would come in and comment on her outfit,” says Umezu. “We always had Charlotte’s fingers and toes painted. Even to a baby, it makes them feel more human and pretty in the hospital.” (What is happiness? Learn what the science says.)

group of friends running with baby charlotteCourtesy Tracy UmezuThe Umezus’ other daughter, 5-year-old Sophie, has shown her big heart during the experience too. For Charlotte’s birthday, Sophie asked to give everyone in her class a copy of Dinosaurs Love Tacos, a book she used to love reading to her sister. “She truly finds joy in things we wouldn’t even notice as adults,” says Umezu. “She’ll find a piece of gold glitter and be elated and say Charlotte sent the glitter.”

Even though Charlotte won’t be there to join them anymore, the family plan to check more things off the joy list, like taking a hot air balloon ride and visiting Japan as a family. But they’re thankful for little moments too. When someone had to stay home with Charlotte, they couldn’t spontaneously go to the movies or even Home Depot. Now they cherish those small excursions. “It’s not necessarily big huge things and big huge outings,” says Umezu. “Joy is just being together as a family.” (Read why a bucket list can make your life more meaningful.)

Umezu says she hopes others can find the joy through the hard times, even when it seems impossible. “In the turmoil the world is in right now and all the sadness people experience in life, we want to help people realize that joy is there,” she says. “Even in the deepest, saddest moments, we remind people it’s there, and that can carry you through the hard times. Sometimes you just have to look a little harder to find it.”