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.

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.

05/21/2026

After a lot of conversations, questions, and weeks of waiting, we’ve decided that we are going to continue forward with Cleveland Clinic for Maverick’s transplant case. Duke reached back out today and let us know that they still had not made a final decision regarding his case. They also shared that in the last five years, they have only seen a very small number of patients with Maverick’s disease (5-10).

At the end of the day, when it comes to something this critical, we need to feel fully confident and reassured in the team leading his care. Hearing differing opinions and not having everyone on the same page about Maverick’s case made this decision clearer for us.

This journey is heavy, emotional, and honestly terrifying at times, but we have to follow the path that gives us the most peace and confidence for our son. We are incredibly thankful for every doctor and hospital that has taken time to review Maverick’s case, and we are continuing to pray for wisdom, guidance, and the transplant teams at Cleveland Clinic to carry him through transplant.

Thank you to everyone who continues to pray for Maverick and stand beside our family through all of this. 🤍

This week for Maverick means more blood draws, more monitoring, and more waiting.The doctors and pharmacists at Coumadin...
05/11/2026

This week for Maverick means more blood draws, more monitoring, and more waiting.

The doctors and pharmacists at Coumadin Clinic feel comfortable keeping Maverick on twice weekly blood draws every Tuesday and Friday. This schedule will continue until transplant. Managing his INR in such a tiny therapeutic window is critical. Right now they have him alternating between 1 pill and 1.5 pills daily just to keep his levels between 2.5-3.

Now imagine what could have happened if Maverick had taken 5 pills for 6 straight days like the prescription error instructed. The doctor was incredibly alarmed when notified and said he was so grateful we caught it because it very well could have cost Maverick his life.

In other news, Duke FINALLY received Maverick’s liver biopsy results from Cleveland after more than a month of signed release papers and waiting. This Thursday his entire case will officially be presented, discussed, and decided upon.

Big week. Big decisions. And a whole lot of prayers being carried into it with us.

Happy Mother’s Day to all the moms walking journeys they never imagined they would face.On August 8th, 2006, during my u...
05/10/2026

Happy Mother’s Day to all the moms walking journeys they never imagined they would face.

On August 8th, 2006, during my ultrasound, I heard the words that changed my life forever:
“Your son’s heart is not compatible with life.”

In that moment, I became a CHD mom.

Nothing prepares you for hearing that your baby may not survive. Nothing prepares you for the fear, the unknown, the countless appointments, surgeries, hospital stays, or the strength you somehow find because your child needs you to.

Maverick changed my life in every possible way. He taught me what true resilience looks like. He taught me how deep a mother’s love can go. This journey has been painful, exhausting, beautiful, and life changing all at once.

Today I celebrate being his mom. And I celebrate every CHD mom carrying the weight of this journey while still showing up every single day with love and strength.

To the moms whose motherhood story looks different than they imagined, I see you today. 🤍

05/08/2026

Things I never imagined learning as a heart transplant mom.

When someone you love has a rare disease and O+ blood type, you quickly learn that waiting for an organ is not simple. Every option comes with hard conversations, heavy decisions, and weighing risks against time.

Today we’re learning more about expanding Maverick’s donor pool, including hepatitis C positive organs, because in the transplant world, sometimes expanding options can mean expanding hope.

None of this is easy. We’re just trying to give Maverick every possible chance. 🤍

This week has been more labs, and today was a quiet waiting day. We did not receive a call from Duke, like we were hopin...
05/08/2026

This week has been more labs, and today was a quiet waiting day. We did not receive a call from Duke, like we were hoping, but we did receive additional education from the pre heart transplant team regarding possible donor options for Maverick, specifically hepatitis C positive donors.

Right now, Maverick is not listed to accept a hepatitis C donor. The transplant team shared educational videos and information with us so we can better understand what that option could look like and decide whether it is something we would consider moving forward.

We have also been told that because of Maverick’s disease process and his O positive blood type, he will not be considered a high priority on the transplant list. O positive is one of the most common blood types, which can make finding a compatible donor more difficult and can mean longer wait times.

These are conversations no parent ever imagines having, but we are doing everything we can to understand every option available to give Maverick the best chance possible to receive a second chance.

At our next visit, we will continue discussing this with Dr. Bhattacharya as we navigate the difficult decisions ahead.

For now, we continue to wait, learn, ask questions, and hold onto hope one day at a time.

From Tuesday to Friday labs…Maverick’s INR went from 1.4 → 1.9.His goal is 2.0–2.5… such a small window to hit.Too low =...
05/02/2026

From Tuesday to Friday labs…
Maverick’s INR went from 1.4 → 1.9.
His goal is 2.0–2.5… such a small window to hit.

Too low = risk of clotting
Too high = risk of bleeding
So every number matters.

You’ll also see PT (Prothrombin Time) on his labs, which went from 14.5 → 19.6 seconds.
That’s simply how long it takes his blood to clot, the higher the number, the longer it takes in seconds.

INR and PT go hand in hand, so as one rises, so does the other.

We’re getting closer 🤍

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