June Jessee’s family couldn’t have been more thrilled when she came into the world in April 2012. Her parents, Genny and Matt, looked forward to watching her grow, learn and develop. But things quickly took a serious turn; doctors discovered that June couldn’t hear, and she began having relentless seizures, kidney and intestinal problems and other neurological issues.
The couple took her to one specialist after another, but the cause of her illnesses remained unclear. “She had developmental difficulties as well,” Genny says. “It was a rough time for our family, but we were devoted to giving her a life of love, and we undertook her care ourselves. We met other people going through similar experiences, and we learned along the way that there wasn’t a lot of outside help for children with complex neurological issues.”
That discovery set the wheels turning in Genny’s mind. “Each time we investigated programs and services, it felt like we were the first ones ever to go through it,” she explains. “I wondered, why are we reinventing the wheel trying to find resources? Wouldn’t it be great if there was a single organization to offer a complete list of available services, explain the process of applying for them and help families handle their mounting bills? Having a sick child can take a toll on anyone, regardless of their income or situation. Often, doctors say a treatment is medically necessary, but the insurance company doesn’t agree, and the expenses add up.”
About 300,000 children in the U.S. have medically complex neurological illnesses like June’s. She passed away in 2016 at age 3, and her parents decided the best way to honor her was to help other children with similar issues. In her obituary, the couple announced they were forming the June Jessee Memorial Foundation to provide resources for families. Genny is executive director of the organization, which helps parents clear the personal and practical hurdles of caring for a sick child. They can get help paying bills, navigating care, accessing free mental health services and more. Genny says the foundation has grown steadily, and she loves being able to help people so they can focus on their kids. The organization works closely with patients at St. Louis Children’s Hospital, but its services are open to other families as well.
Each year, the foundation holds a Legacy Luncheon to raise funds for its important work. The event is on June’s birthday, April 29, at the Hilton St. Louis Frontenac Hotel. It supports programs like Moms’ Night Out, dinners and classes for parents, caregiver stress management and more. Genny says the lunch is a meaningful, uplifting experience, and guests thoroughly enjoy its auction, raffles and inspirational speakers. KSDK anchor Anne Allred will serve as emcee, and a wide variety of special auction items will include wine dinners and jewelry.
Genny describes her family’s time with June as “frightening, painful, raw, beautiful, precious and short” and says they wouldn’t trade a moment of their life with her. “She inspired us, and we want to do the same for others,” her mother says. “If we had to go through it all again, we would choose June every time.”
The June Jessee Memorial Foundation helps families of children with complex neurological issues access the care and services they need. Its annual Legacy Luncheon is 11 a.m. April 29 at the Hilton St. Louis Frontenac Hotel. Pictured on the cover: St. Louis Children’s Hospital therapist Katherine Aravamudan, Dr. K. Liu Lin Thio, Genny and Matt Jessee. For information about the event, visit junejessee.org.
Cover design by Julie Streiler
Cover photo by Bill Barrett
Pictured at top: Amy, Richard and Marlie Sexauer with Genny and Matt Jessee
Photo: Bill Barrett
