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Meet Genny Jessee of June Jessee Memorial Foundation

Today we’d like to introduce you to Genny Jessee. 

Hi Genny, thanks for joining us today. We’d love for you to start by introducing yourself.
My life forever changed on April 29, 2012, not just because I became a mother but also because I became June Jessee’s mother. June had an undiagnosed, medically complex, neurological disorder. We had no idea there was any indication of something wrong with her health until shortly after she was born when she failed the newborn hearing screening at the hospital. And we wouldn’t fully realize the magnitude of her health until roughly 2 years later. 

After further testing surrounding June’s hearing, we learned she had auditory neuropathy, a type of hearing loss associated with how the brain processes sound. 

I remember asking the ENT physician, “If there’s something wrong with how June’s brain processes sound, how do we know if there isn’t anything else wrong with her brain?” 

“We don’t,” she responded empathetically. “We will just have to wait and see if she meets her milestones.” 

Not long after, when June was about 10 weeks old, she was diagnosed with infantile spasms, a catastrophic type of seizure, eventually numbering in the hundreds to thousands each day. 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, we were desperate to find answers and a cure. So, we 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. 

We 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. Yet, with no specific diagnosis, only the wastebasket distinction of ‘medically complex’ or ‘medically fragile, there were few resources to help support or guide us through a complicated healthcare system. 

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, my husband Matt and I founded the June Jessee Memorial Foundation in her honor to provide relief and support to other families facing undiagnosed, neurological conditions. Although June could not communicate in words, she spoke to our 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. 

Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
Starting the June Jessee Memorial Foundation (JJMF) sprung from our experience caring for June, and that was anything but a smooth road. Everyone talks about not having a roadmap when they begin parenting, but there isn’t even a paved path when you have a child with June’s complex needs. As my husband and I started on this journey, we began to meet other parents who had children with similar conditions, and it felt like each of us was plowing our own way. I couldn’t understand why we were all doing the exact same leg work when finding resources and support. And that’s why we founded JJMF. We are the only U.S. foundation solely dedicated to assisting children with these chronic, neurological conditions with no specific diagnosis, providing needed resources, services, and connections to help make their lives easier. We do this by providing uncomplicated financial assistance for out-of-pocket medical needs, support to relieve and recharge families, free mental health care for parents and caregivers, and a welcoming, understanding community. 

In terms of starting the foundation, that has happened pretty organically and has come together smoothly. I’ve been overwhelmed by the support from our generous donors and by the enthusiasm of our volunteers. As people learn about the needs of our community, they can’t believe how little support is available to the families we serve, and our donors want to help them. 

Surprisingly, one of our biggest struggles is getting families to accept financial assistance. Not because they don’t need it, but because they want it to go to other families that they think need it more, and that has been a truly humbling experience for me. To hear people who are tired and treading water to stay afloat say, “give that life raft to someone else” … goes to show you the nature of this community of families. So, we are trying to find creative ways to support them besides financial assistance. For example, we fund free mental healthcare for parents, which is a service of which they are taking advantage. 

I additionally want to emphasize that I am also impressed and humbled by the families who do accept our financial assistance without hesitation. These funds are intended for them because we believe their child and family deserve to be supported; There is so much strength in accepting help. No one can do this alone. 

Thanks – so what else should our readers know about June Jessee Memorial Foundation?
The June Jessee Memorial Foundation (JJMF) is a nonprofit organization that provides relief to help support and care for children with devastating medically complex, neurological conditions and their families. We are the only U.S. foundation solely dedicated to assisting children with these chronic, neurological conditions with no specific diagnosis, providing needed resources, services, and connections to help make their lives easier. 

Founded in honor of June Jessee, a brave girl who fearlessly faced the multiple, life-limiting conditions she endured, the JJMF aids the courageous children with undiagnosed, neurological disorders and their families through: 

– Uncomplicated financial assistance for out-of-pocket medical needs
-Free mental health care for parents and caregivers
– Support to relieve and recharge families
– A welcoming, understanding community 

At this point, I am most proud of our mental health program for caregivers. Through our partnership with St. Louis Children’s Hospital, the JJMF provides free mental health services, both in-patient and out-patient, to help parents support their mental wellbeing and overall health. In the first year of offering this service, the dedicated mental health therapist found that 1 in 3 caregivers in the Neurology unit experience a clinical level of anxiety and/or depression symptoms. In 2020 JJMF funded mental health therapy sessions for 258 parents and caregivers, and it’s a program parents frequently reach out to me about, so I know it is making an impact. It is understood that most parents and caregivers of the patient population we serve will suffer from significant worries, depression, or even post-traumatic stress disorder (PTSD) at some point when caring for their child. We are committed to de-stigmatize mental health issues in parents and caregivers so they can get the help they need. This is hard, and we want them to know they do not have to handle this alone. 

Are there any important lessons you’ve learned that you can share with us?
I don’t know if I can think of just one lesson! There are so many lessons I learned about life and myself while caring for June, such as life is really freaking hard. And bad things happen that are out of our control. They just do and will. But that doesn’t have to be the end of the story. We have so many options and so much power in our reaction and in our outlook to how we deal with that life truth. But that outlook doesn’t happen overnight. There were some really dark days, months, and years, especially in the beginning. I had to allow all those feelings of anger, resentment, and jealousy – you name it, I felt it – to come. I couldn’t force them away with gratitude, but I learned I could endure them with a little bit of appreciation. And isn’t that maybe the best possible outcome in an unfixable situation? How can I make this terrible reality a little more bearable? What modifications in my life can I make to reach that? For me, that was finding – seeking – joy and appreciation – any crack of light in the darkness that I could find, I clung to. But that was a muscle I had to build, and still have to work on it. 

In terms of JJMF, I think the most important thing I learned while starting the foundation is that a good idea coupled with passion and dedication can propel your business forward. That energy is contagious and people want to latch on to your idea and help you grow it. I love what I do with JJMF – I literally want to work on it all the time. It doesn’t feel like work, and I love finding ways to support families in an impactful way. It is healing for me to find ways to make our time in the trenches meaningful. 

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