Tracy Umezu is, in her own words, a “go big or go home” kind of person.
That fact alone would probably be enough to explain why Tracy, who is not an experienced runner, decided to sign up for the 2016 Medtronic Twin Cities Marathon.
But the Minnesota mom has another reason to complete the grueling race: Her 2-year-old daughter, Charlotte.
Following her birth in 2014, Charlotte had trouble breathing and was put on life support. Soon after, she began suffering seizures. They were relentless, sometimes occurring hundreds of times in a single day. As specialists chased down a diagnosis, Tracy and her husband Junji struggled with their own grief—and a sense that fate had not been fair to Charlotte or their family.
“From the minute she was born, we experienced this loss of joy. We didn’t get to share in the same things as other young families,” Tracy said.
Ultimately, Charlotte was diagnosed with a rare and severe form of epilepsy caused by a genetic mutation in Charlotte’s SCN2A gene. A deletion or mutation in this gene is known to cause autism, dystonia, epilepsy and other neurological conditions.
SCN2A-related epilepsy is associated with a spectrum of severity—and Charlotte, according to her mom, is on the severe end. She experiences varying types of migrating seizures, which originate in different areas in her brain, making it impossible for epilepsy specialists to pinpoint a “source” for surgical treatment.
Charlotte stayed at the University of Minnesota Masonic Children’s Hospital Neonatal Intensive Care Unit (NICU) for the first three months of her life. While she was there, Charlotte’s care team tried several different medications to control the seizures. Since then, Charlotte has been hospitalized 11 more times for respiratory infections and severe seizures. She is currently on seven seizure medications, though her complications continue.
In the face of these challenges—and to recapture some of the joy lost from Charlotte’s life—Tracy created a “Joy List.” The idea behind the list is simple: Allow Charlotte to experience as much in life as possible. The list currently contains 60 items. Some as simple as going to a movie or playing with shaving cream. Others, like visiting Japan and meeting someone famous, are a bit more complex.
Item #46 on the list? Participate in a marathon.
Come Oct. 9, Tracy plans to run 26.2 miles with Charlotte, who will be equipped with a specialized wheelchair. A team of supporters will accompany them—including Registered Nurse Ann Stanoch, who met the family and cared for Charlotte when she was still in the NICU. Stanoch, a veteran marathoner and a close friend of the family, will carry emergency seizure medication. Another physician—equipped with additional emergency medical equipment, will shadow the team on a bicycle. Charlotte’s wheelchair will be pushed by a member of myTeamTriumph.
The group, named “Team Seize Your Joy,” has another goal beyond finishing the marathon. They’re using this opportunity to help raise funding for FamilieSCN2A, a foundation that supports clinical research focused on the SCN2A mutation.
Pediatric Pulmonologist Terri Laguna, MD, is one of several specialists who helps care for Charlotte at University of Minnesota Masonic Children’s Hospital. Charlotte’s condition causes underlying muscle weakness, which makes it difficult for her to cough or swallow normally. Laguna, who helps keep Charlotte’s lungs clear and healthy, plans to cheer the Umezu family at the marathon finish line.
“The Umezus have always put Charlotte’s needs and her quality of life first, which can be challenging to do as parents,” Laguna said. “The ‘Joy List’ is their ultimate expression of love for Charlotte.”
Tracy also hopes to transform the “Seize Your Joy” effort into a lasting cause.
“Hopefully this will be a lifelong movement that lives on past Charlotte and keeps her legacy alive,” Tracy said.
But in the short term, she’ll settle for the joy of running—and sharing another special moment with her daughter.“There’s joy in everything, and we believe that the joy is the root of happiness,” Tracy said. “For me, the marathon is not only about SCN2A awareness. Running it also represents a small part of the sacrifice and pain that Charlotte has to go through.”