OUR MISSION

The L.I.O.N. Foundation is dedicated to improving the lives of children with neurological and physical disabilities. We do this by providing life-changing sports experiences, mentorship, and adaptive opportunities, while also supporting long-term advancements in neurological care, including innovative treatments such as stem cell research, and the development of inclusive adaptive sports and community facilities.

OUR VISION

A world where children with spina bifida have access to cutting-edge medical advancements, grow up confident in their abilities, and are surrounded by a strong, inclusive community that sees them for who they are, not what they lack.

HOW WE CREATE IMPACT

Black silhouette of a cat sitting and looking to the left.
A black and white illustration of a spider hanging from a web.

Sports create community, confidence, and lifelong lessons. Through the L.I.O.N. Sports Experience, we give kids with neurological and physical disabilities opportunities to experience the power of being part of a team.

Our programs include:

  • Game Day Experiences with local high school, college, and professional teams

  • Athlete Mentorship connecting participants with inspiring role models

  • Inclusive Adaptive Sports Camps designed for athletes of all abilities

Experiences: Building Belonging Through Sports

Silhouette of a person mountain biking on a trail during sunset

Many families face financial and logistical barriers when trying to access adaptive sports opportunities.

We support families by providing adaptive sports equipment that insurance often does not cover, helping kids access the tools they need to stay active and engaged in sports.

Because the opportunity to play, compete, and grow should never be limited by access to equipment or resources.

Access: Removing Barriers to Participation

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Innovation: Investing in the Future

While we focus on creating meaningful opportunities today, we are equally committed to building a better future for individuals living with neurological conditions.

Our long-term vision includes:

  • Investing in neurological research, including innovative treatments such as stem cell therapy

  • Developing an inclusive adaptive sports and recreation complex designed specifically for individuals with physical and cognitive disabilities.

    This future facility will provide a place where children and adults can train, connect, and build community in an environment built specifically for their needs.

Our Story

A newborn baby sleeping in a hospital bassinet with medical tubing attached.

Why is it taking so long?

And then we heard it… the knock. You know the knock. The one doctors give right before they walk in. Our doctor opened the door with a nervous smile. It was the kind of smile someone gives you when they’re about to say something they don’t want to say.

“Unfortunately… I have some bad news. Your lives have just changed forever.” Her voice cracked—almost like she was scared for us.

In that moment, the weight of what we were hearing began to settle in. We sat there frozen, with a pit in our stomachs, struggling to fully process the words being spoken. Our minds went to places no parent’s mind should ever have to go.

Is our baby going to make it?

And even harder to think about… if he does survive, what will his quality of life be?

Those thoughts were real. And they were terrifying.

The very next day, after more in-depth imaging, we learned the diagnosis: Our son had Myelomeningocele, the most severe form of Spina Bifida. In that moment, our lives changed forever.

Understanding Spina Bifida

Spina Bifida, in short, is when a baby’s spine does not fully develop inside the spinal canal, leaving the spinal cord exposed outside the body as the baby grows in the womb.

Over time, that exposure can damage the nerves of the spinal cord, which can lead to a wide range of developmental challenges (physical and cognitive) and those outcomes can vary greatly from child to child.

We learned about an incredible surgery that can sometimes be performed in utero, where doctors are able to repair the opening before birth. In many cases, this helps prevent further nerve damage and can dramatically improve outcomes.

Hearing about that surgery gave us hope.

But Leo’s case was different.

Leo also had Kyphosis, a curvature of the spine that can be common with this diagnosis. But Leo’s curvature was severe—so severe that doctors did not recommend any in-utero surgery.

It was heartbreaking.

It was hard enough to hear the diagnosis… but then to learn that there was a procedure that could improve outcomes, and that it wasn’t an option for our son…

We felt helpless.

At follow-up scans, we watched Leo’s movements become more and more subtle.

And the fear grew.

March 2, 2025 — Leo Arrives

On March 2, Leo was welcomed into the world.

Almost immediately, he was transferred to the NICU, and we waited until his vitals were stable enough for surgery.

Every hour mattered.

The longer the spinal cord remained exposed, the higher the risk of further damage and infection. Finally, at barely two days old, Leo was wheeled back for surgery. A surgery that would take more than six hours.

His First Surgery

Leo’s first surgery was to repair the opening in his spine. The doctors were able to successfully place his spinal cord back into the spinal canal. They also shaved down some structural bone protruding from his kyphosis so that they could safely close the area.

Leo made it through his first hurdle in life. His surgery was successful. As he recovered, he was monitored constantly (every few hours) while we lived in a state of exhaustion, prayer, and hope.

Hydrocephalus and Leo’s Second Surgery

One complication that can come with this diagnosis is Hydrocephalus, which is a buildup of fluid in the brain.

In a typical body, the spinal cord plays a role in helping that fluid drain properly. But because Leo’s spinal cord had been damaged during development, we knew there was a chance his body wouldn’t be able to regulate that fluid on its own.

After days of monitoring, conversations, and difficult decisions, we were told Leo would need a VP Shunt.

A VP Shunt is placed under the scalp and into the brain like a drainage system. It’s adjustable and is used throughout a person’s life to help maintain healthy fluid levels.

At just five days old, Leo was wheeled back for his second major surgery.

This one… brain surgery.

4+ hours later, he was brought back to us, peacefully sleeping. Another successful operation.

We could see the large bulge of the shunt beneath his scalp and the outline of the tubing that ran behind his ear, down his neck, and into his abdomen. It was hard to look at… because it was a reminder of everything he was going through.

But it was also a reminder of what he had overcome.

Today, that shunt is barely visible as Leo grows. Every few months, we return to the doctor to check it and adjust it as needed. That tiny device (almost barely visible now) works every day to do what most bodies do naturally.

Coming Home

After a little over two weeks, Leo graduated from the NICU earlier than expected. And we finally brought him home.

Home to meet his best friend and big brother, Charlie. That’s when the real journey began.

Where We Are Today

Today, Leo has subtle movement in his legs. And he works every single day through rehab to keep building strength, development, and independence. We don’t know exactly what the future holds.

But we do know this:

Leo is a fighter.

And we believe he is here for a reason.

Leo’s journey began on March 2, 2025, the day he entered this world through an emergency C-section at Cincinnati Children’s Hospital.

But his story started long before that.

In October of 2024, we went in for our routine 20-week anatomy scan. After facing some minor scares with our first son, Charlie, our emotions that day were a mix of excitement… and a little bit of anxiety.

As the ultrasound tech guided us through the scan, pointing out different parts of our baby’s anatomy, we were filled with hope. She even snapped a few pictures for us to take home and share with our 1.5-year-old, and for a moment, everything felt normal.

After about 30 minutes, she walked us back to the waiting room where we would meet with the doctor and go over the results.

We sat there feeling relieved. Nothing seemed wrong—at least not from our perspective. But as the minutes passed… our relief started to fade. The longer we waited, the more nervous we became.

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