Mom Makes 'Joy List' To Help Her Severely Ill Daughter Live Life to the Fullest
Minnesota toddler Charlotte was born with SCN2A, a rare and severe form of epilepsy. The disorder means the two-year-old can have up to 400 seizures a day, and, as a result, she's spent most of her young life in the hospital.
Her mother opened up about her daughter's struggles to Today:
She is by far one of the more severe cases-she has struggled the whole two years of her life with uncontrolled seizures and complications that go along with that like respiratory problems and issues with her bowels.
With never-ending hospital visits and medical monitors never too far away, young Charlotte obviously has a very difficult childhood. That's why her mother, Tracy Umezu, decided to create a 'joy list,' in an effort to surround the little girl with as much joy as possible.
The list consists of activities anyone else would take for granted-finger painting, eating ice cream, going shopping-but for Tracy, her husband Junji, and their elder daughter Sophie, those moments are treasured experiences to share with the beloved daughter and sister that may not be around for long. "We don't know her prognosis-it's probably not very good-and we don't know how long we will have her," Tracy tells Today. "We wanted something to focus on to make sure she experiences as much in life as possible in the time she does have."
Also on the list: kayaking, taking an old-fashioned photo, being a princess, and going down a giant slide. Each adventure is documented with sweet photos, helping the family further cherish every minute with Charlotte.
One of the family's most exciting adventures has been completing a marathon, which they recently accomplished by running the Twin Cities Marathon in the Minneapolis-Saint Paul area. Tracy, who trained all summer, ran it by herself while Charlotte was pushed in a custom stroller by a team of medical professionals.
While Charlotte has been lucky enough to experience many items on the list already, there are dozens more to accomplish, including enjoying library story time, visiting an aquarium, and going on a New York City shopping trip. "We'll keep checking things off the list as long as we have Charlotte with us," says Tracy.
Here's to little Charlotte seizing as much joy as she can! To learn more about her story or to help with her adventures, check out the rest of Charlotte's Joy List.
(h/t Today)
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