LITTLE CANADA, Minn. (WCCO) — People run marathons for a myriad of reasons – from simple stress relief to improving on a past time.
For Little Canada mother Tracy Umezu, the motivation is all about a mother’s endless love.
Her two-year-old daughter, Charlotte, was born with something you’ve probably never heard of. Few people have. It’s a genetic mutation which affects the SCN2A gene. That disruption causes constant seizures from the rare and severe epilepsy.
“From the get-go, she was born with over 400 seizures a day,” Tracy said.
Charlotte has been in and out of the University of Minnesota’s Masonic Children’s Hospital, where she has undergone extensive care.
Tracy and husband, Jungi, have struggled to cope with the grief and sadness of a child unable to experience the normal childhood joys.
From a medical standpoint, it’s impossible to experience the simplest of pleasures when you are never far from oxygen concentrators and other medical monitors.
Then again, that’s exactly why Tracy put together a “joy list” of dozens of things for Charlotte to experience.
The list contains the simple and mundane, such as riding a horse to eating ice cream. But there are other more grandiose items on the list, such as a trip to Hawaii and riding in a kayak.
“We decided we’d make it a mission to surround her with as much joy as we possibly could,” Umezu said.
Perhaps that’s why number 46 on Charlotte’s list is so exhilarating. Together with her mother, Charlotte is about to run in the Twin Cities Marathon on Sunday.
Preparing her daughter for the challenge is nothing short of amazing. It will require the help of medical professionals to assure everything goes smoothly for Charlotte along the three-hour course.
“One of the things she loves is movement, so a marathon for her will be so cool to get the sensation of running and wind across her face,” Tracy said.
While the mother admits she is not a runner, she’s been training for this marathon all summer long, pushing Charlotte along in a runner’s stroller.
On race day, the stakes will be much higher.
Tracy will run alone and leave Charlotte in the care of medical professionals. Masonic Children’s Hospital nurse and close friend, Ann Stanoch, will run at Charlotte’s side, and a special stroller-wheel chair will be pushed by a volunteer with MyTeamTriumph.
In addition, a medical doctor will be nearby on a bicycle with immediate access to the necessary equipment should Charlotte need help breathing or medicines to control seizures.
“Her pusher, Katie, with MyTeamTriumph, is going to be pushing the chair and Charlotte and all the supplies,” said R.N. Ann Stanoch. “So it’s a big feat we’re taking on.”
For the Umezu family, the message is simple – it’s their way of reminding all of us to take the time to enjoy the simple things in life.
“If people take the time to see joy, it will bring happiness too,” Tracy said. “So our hope is that through Charlotte we’re teaching people that.”
If you would like to learn more about Charlotte’s story or to help the family accomplish her list of joys, more information is available here.