Tracy Umezu, a mother of two daughters in Minnesota, had always expected the birth of her second child to be a joyful celebration. And while Charlotte’s birth was one to be celebrated, the occasion was far less joyful than Umezu anticipated.
Charlotte Umezu, now two years old, was born with SCN2A, a rare form of epilepsy that causes neurodevelopmental diseases, infantile spasms, and other developmental problems during early infancy.
This is how Umezu summarizes her daughter’s condition: “It's a problem with the sodium channels in her brain and it causes her to have seizures constantly.”
As a result, Charlotte has spent most of her life in the hospital recovering from her seizures and the complications – “respiratory problems and issues with her bowels” – that have risen because of these incidents.
After spending so much time in the hospital, Umezu and her husband, Junji, felt that their second daughter was unfairly missing out on so many of life’s small joys.
This realization was what ultimately prompted the Umezu family to create a “joy list” for their daughter. The list consisted of simple, but joyful, experiences that the family wanted Charlotte to experience before the epilepsy ended her life.
“They're things you maybe wouldn't think would bring you joy, but we just wanted to make the focus on the fact that you can experience joy in the little things, too,” Umezu explained.
So far, Charlotte has dressed up on many vacations, celebrated Halloween as Donkey from Shrek with her family, rode down a large slide, gone kayaking, met an Olympian, and run in the Twin Cities Marathon – all alongside her older sister and her parents.
The Twin Cities Marathon in particular was a big deal for Umezu. She never considered herself a runner, but knew that she wanted to give her daughter a chance “to feel the sensation of running and to feel the wind on her face.” Because Charlotte can’t and will never be able to walk, it was important for Umezu “to have somebody give her the legs to do that.”
The Umezu family registered for the marathon with a team of runners, all of whom wanted to raise awareness for the SCN2A disease, as well as the Umezu family’s organization, Seize Your Joy.
Charlotte’s joy list still has several unfinished tasks – including going to New York City to sled and riding in a hot air balloon. We wish the Umezu family all the best of luck in finishing the joy list – and more – with their daughter, Charlotte.
