Maverick's Movement

Maverick's Movement Born with HLHS, 5 open heart surgeries, pacemaker, and now Maverick’s future depends on a heart & liver transplant.

Maverick was born with Hypoplastic Left Heart Syndrome (HLHS) and began his journey with his first open-heart surgery, the Norwood procedure, at just 4 days old. He continued with the Glenn at 8 months and the Fontan at 2 years, followed by an abdominal pacemaker at age 8 and a complete pacemaker replacement at 18. Now 19, Maverick faces the need for a heart and liver transplant and is searching f

or a center willing to accept his case, after being deemed too high-risk by two transplant centers. His story is a testament to resilience, hope, and the life-saving impact of organ donation.

06/20/2026

🏌️‍♂️🎗️ Raffle Basket Donations Needed! 🎗️🏌️‍♂️

As we prepare for our upcoming Golf Outing Benefit for Maverick this September, we are looking for individuals, families, and local businesses willing to donate items or themed baskets for our raffle fundraiser.

Every raffle basket donated helps us raise funds to support Maverick as he awaits a life-saving heart transplant and spread awareness on the importance of organ donation.

Some basket ideas include:
🧁 Baking & Coffee
🎬 Movie Night
🏈 Sports Fan Favorites
🍂 Fall Favorites
🎁 Gift Cards
🛁 Self-Care & Spa
🎣 Outdoor & Fishing
🍫 Snacks & Treats
🎯 Family Game Night

If you would like to donate a basket, gift card, product, service, or help in any way, please send us a message.

Thank you for supporting Maverick's Movement and helping us make this event a meaningful day for our family and community. ❤️

💙 87% 💙I’ll ask Maverick how he’s feeling, and like most days, he’ll say, “I’m fine.”But as his mom, I see the changes.I...
06/19/2026

💙 87% 💙

I’ll ask Maverick how he’s feeling, and like most days, he’ll say, “I’m fine.”

But as his mom, I see the changes.

I see that his color is never quite right anymore. I see how he slows down after activities that used to be easy. I see the exhaustion, the shortness of breath, and the way his body is working harder just to keep up.

Last night his oxygen saturation was 87% (his new normal). Every time I put the pulse ox on his finger, I catch myself hoping for a number in the 90s.

The monitor simply confirms what I’ve been watching happen over time, the fading color, the slowing pace, the growing fatigue. Changes that are easy for others to miss, but impossible for a mother not to see.

Some days the hardest part isn’t the number on the screen. It’s knowing what that number means.

💙

06/18/2026

Monday Maverick had an appointment in Cleveland with Rheumatology and they ordered several tests.

💙 Why Did Maverick Need a Bone Density Scan? 💙

As part of Maverick’s heart transplant process, doctors ordered a bone density scan (DEXA scan) to check the strength and health of his bones.

Many people are surprised to learn that heart disease, chronic medical conditions, reduced exercise tolerance, nutritional challenges, and certain medications can all affect bone health over time. Because Maverick has lived with complex congenital heart disease his entire life, his transplant team wants to establish a baseline now so they can monitor any changes in the future.

The good news? His results showed that his bone density is within the expected range for his age, with no evidence of osteoporosis and no spinal fractures identified. 🎉

After transplant, bone health becomes even more important. Anti-rejection medications, especially steroids that are often used during and after transplantation, can increase the risk of bone loss. That’s why transplant recipients are typically monitored with regular bone density scans, often yearly, so doctors can identify changes early and protect bone health before problems occur.

This test is one more example of how thorough the transplant process is. The team isn’t just evaluating Maverick’s heart, they’re looking at his entire body to make sure he is as healthy and prepared as possible for transplant and recovery.

Another test complete. Another step forward. 💙

The test Maverick recently completed last week was released to his portal today.One of the most important numbers from t...
06/12/2026

The test Maverick recently completed last week was released to his portal today.

One of the most important numbers from this test is called VO₂, which measures how much oxygen the body can use during physical activity.

A healthy 19-year-old male would typically be expected to perform at 85–100% of predicted capacity. Maverick’s test measured only 29% of predicted capacity, meaning his body is able to utilize less than one-third of the oxygen expected for someone his age.

Another way to look at it is if a healthy 19-year-old is operating at 100%, Maverick is functioning at about 29%.

The testing also showed that his heart is still unable to increase its output normally during exercise, and his heart rate response remains significantly limited. In simple terms, when his body asks for more blood flow and oxygen during activity, his heart cannot fully meet that demand.

While there was no significant decline compared to previous testing in March. His exercise capacity remains severely reduced and well below what would be expected for a healthy young adult.

These numbers help explain why activities that seem routine for most people his age require much more effort from Maverick’s body.

The test results provide important information for his transplant team as they continue to monitor his condition and plan for the future.

Thank you for continuing to support Maverick, follow his journey, and advocate for organ donation. 💙

A life-saving donor WILL help improve his outcome and give him the chance for a stronger future. 💙

Yesterday, Maverick completed another exercise study at University of Michigan Children’s Hospital. While we are still w...
06/06/2026

Yesterday, Maverick completed another exercise study at University of Michigan Children’s Hospital. While we are still waiting for the official results to be released to his portal, the physician shared that the testing showed further decline, and those findings will also be sent to Cleveland for review.

At home, Maverick’s oxygen levels are often between 85–88%. When he sleeps, they drop into the 70s.

Simple daily activities that most people don’t think twice about can be exhausting. The other day, he and his sister Emme rode their bikes to the high school, less than a quarter mile from home. What should have been a simple ride ended with Maverick needing to turn around and come right back because he was so fatigued. Exercise is important, but with heart failure there is a fine line between staying active and pushing too hard.

These days, our walks are usually just to the stop sign and back. If you see Maverick using a scooter at the store, please know he isn’t being lazy or goofing around. He simply does not have the energy reserves that most of us take for granted.

Not all illnesses are visible. Sometimes the strongest people are fighting battles you can’t see.

Thank you for continuing to support Maverick’s journey and keeping him in your thoughts as we wait.

❤️

06/02/2026

In two days, Maverick will head back to Michigan for another exercise study.

He has already completed these tests twice a year and more frequently now in December, January, and March, and now it’s time to see how things are progressing again.

During the study, he’ll do both a treadmill test and a bike test while connected to an EKG, oxygen and monitors that track his heart rate, heart rhythm, oxygen levels, and how his body responds to exercise.

With heart failure, one of the biggest things his team watches is how well his heart responds to exertion. A healthy heart rate should increase as activity increases, but Maverick’s heart has continued to show the strain as his heart is unable to speed up with exertion the way it should. His oxygen levels, which are already low also drop significantly during exercise, giving his transplant team important information about how his heart is functioning.

These tests provide an objective look at what his body can and cannot do, helping his doctors monitor changes over time while he waits for a heart transplant. These continued tests also help his teams, decide when they want to move him up on the list. As with his disease he can only be listed as a status 4 or 2.

December. January. March. And now again. Each test is another snapshot of where he is in this journey and helps guide the care that keeps him moving forward.

❤️

05/31/2026

Right now, hundreds of people in Ohio are waiting for a life saving organ transplant. Approximately 285 Ohioans are currently waiting for a heart transplant.

One of them is Maverick.

Behind every number is a person with dreams, goals, and loved ones hoping for more time. For our family, this isn’t just a statistic. It’s our reality.

As we wait, we continue to hope, pray, and advocate for the gift of organ donation. One donor can change multiple lives and give families more moments together.

Today, we ask you to consider becoming an organ donor and help spread awareness.

❤️ For someone on the waiting list, it could mean everything.

Today was exactly what Maverick needed ⛳️💚Just him and Sophia out on the golf course together, laughing, making memories...
05/29/2026

Today was exactly what Maverick needed ⛳️💚

Just him and Sophia out on the golf course together, laughing, making memories, and getting a little bit of normalcy and happiness in the middle of everything else life has thrown at him lately.

Sophia wanted to give her brother a day where he could simply have fun, clear his mind, and just be a kid — and she did exactly that. Watching their bond and seeing the joy on his face means more than words can say. 🤍

One choice can change everything. 🤍Right now, thousands of people are waiting for a second chance at life, someone’s chi...
05/25/2026

One choice can change everything. 🤍

Right now, thousands of people are waiting for a second chance at life, someone’s child waiting for a heart, a mom waiting for a kidney, a dad hoping for more time with his family. Becoming an organ donor is one of the most selfless and powerful decisions you can make.

You can save up to 8 lives and heal dozens more through tissue and cornea donation.

A legacy of love doesn’t have to end with us, it can live on in someone else’s tomorrow.

Say yes to being an organ donor.

Register. Have the conversation. Share hope. 💚

05/23/2026

Some days I wish people could actually hear what my mind sounds like.

The constant second guessing. Replaying conversations. Thinking through every possible outcome. Wondering if we’re making the right choices, if we’re missing something, if there’s a better answer somewhere.

Trying to stay strong and confident while mentally carrying 100 different thoughts at once is exhausting. And the hardest part is that no matter what decision gets made, the weight of it never really leaves your mind.

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