June’s Story
The June Jessee Memorial Foundation was founded in honor of June Jessee, a brave girl who fearlessly faced the multiple, life-limiting conditions she endured.
June’s Health Journey
Born on April 29, 2012, at birth there were no indications of the health issues June would face except for one. June failed her newborn hearing screening at the hospital. While concerning, June’s parents, Genny and Matt Jessee, understood that there are many reasons for a newborn to fail their first hearing test, and that very few of these babies end up with permanent hearing loss. The Jessees left the hospital with their sweet, beautiful “June bug,” brimming with joy over their first-born child and full of excitement for their life ahead.
But not long after bringing June home from the hospital, another health issue arose – one that would change their lives forever. June started having infantile spasms, a form of epileptic seizures, eventually numbering in the hundreds to thousands each day. Desperate to find answers, her parents took her to one specialist after another, coming away with more questions than answers on the underlying cause of her symptoms and only temporary solutions. They lived in a constant state of worry and unknowns about June’s health and future, providing June with around-the-clock care between frequent physician visits and hospital stays. With no specific diagnosis, only the wastebasket distinction of ‘medically complex’ or ‘medically fragile’, there were few resources to help support or guide them through a complicated healthcare environment.
As June’s issues compounded – developmental delays, kidney problems, feeding issues, partial blindness, bowels that simply stopped working, and more – and exhaustive testing failed to reveal an overarching diagnosis, her parents turned to experimental therapies, even moving the family hundreds of miles from home…without success.
“In building the JJMF, our goal is to create a resource we wished would have existed when June was alive. A resource to help guide and make the paths of undiagnosed, neurological conditions smoother. Most importantly, a resource that takes June’s spirit and bravery, and the bravery of all facing undiagnosed, neurological conditions, to create a unique, supportive community that didn’t previously exist.”
Genny Jessee
June’s mom, co-founder, and executive director of the JJMF
June’s Legacy
June died on February 4, 2016; a little more than two months shy of her 4th birthday, surrounded by her mom, dad, and baby brother.
Inspired by June’s bravery, her parents founded the JJMF in her honor to provide support and resources to other families facing undiagnosed, neurological conditions. To be people that would make her proud.
Although June could not communicate in words, she spoke to many hearts – deeply and profoundly – and continues to positively impact people every day. Through the JJMF, June’s legacy has provided needed assistance to hundreds of families in the St. Louis area and beyond.
But as the foundation has grown, the JJMF has evolved into something even bigger than June’s parents initially imagined. It has become a community where children with undiagnosed, neurological conditions and their families can come together and feel welcome, no matter what stage of their journey they are at. Where differences are celebrated. Where they feel supported and understood. And where they can have fun, even breathing sighs of relief.
Our community’s common bonds are creating something stronger, helping to make the unknown more manageable for children and parents living without a specific diagnosis. We invite you to connect with us and learn more about the JJMF, and join us in creating something truly unique for families with few answers.
