The Brett Boyer Foundation

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The Brett Boyer Foundation

The Brett Boyer Foundation was created in loving memory and in honor of our beloved daughter Brett. We are truly grateful to be a part of .

Brett is our first child who was diagnosed prenatally with Down syndrome and a congenital heart defect (CHD). Brett battled this heart disease (atrioventricular septal defect ) for her 7 inspiring and incredible months of life. When we received Brett's diagnosis, Bo and I were uneducated on DS and CHD and were very fearful. The more research we did, the more we realized, the world is in the dark a

bout the underfunding of research to improve the lives of those living with both DS and CHD. As soon as Brett was born we knew that DS was nothing to be feared and was quite possibly one of our favorite things about her. We were so fortunate to live in a great area with a very strong Down Syndrome community. We hope that if you receive a diagnosis, that you will find the same near you, or start one of your own! Down Syndrome is certainly something we believe should be celebrated! There was nothing down about Brett, that is for certain. We only wish we could go back in time to the day of our diagnosis and know what we know now about DS. Instead of tears there would be a high five and a hug saying, “we have hit the lottery!”

Brett’s heart disease diagnosis was a bit different, its hard to find a positive light on hearing your baby will have to have open heart surgery to survive. Fortunately for most, an AVSD (atrioventricular septal defect) is repairable 97% of the time. Unfortunately, we were in the 3%. But our strong baby girl fought hard, and so did the incredible team at Vanderbilt who loved her dearly. That is why this mission is and will always be near and dear to our hearts. What we witnessed in our 100 day stay in the hospital were doctors, nurses, nurse practitioners, respiratory therapist, social workers, transplant teams, sonographers, phlebotomist, and many more fighting to give our girl more options. We believe in these people and their mission. We believe they can revolutionize the world of cardiac surgery, and plan to help them fulfill their God given talents to our utmost ability. At the end of the day, Brett filled our lives with more love than we ever knew possible. Her life deserves to be celebrated and we are so thankful God chose us to be her parents. We could not be more proud of her. We see her everywhere, in everything that we do. We feel called to share the light she left shining in our hearts.

09/03/2026

Our upcoming CHD Community Day at the Nashville Zoo is SOLD OUT! 💛

We are so grateful to the incredible sponsors helping us create a special afternoon for heart warriors and their families. Because of their generosity, families affected by congenital heart disease will have the opportunity to come together, connect, make memories, and simply enjoy a fun day at the zoo.

A heartfelt thank you to:

Monroe Carell Jr. Children’s Hospital at Vanderbilt Monroe Carell Jr. Children's Hospital at Vanderbilt
Atmos Energy Atmos Energy
Down Syndrome Association of Middle Tennessee dsamt
D&K Menswear D&K Menswear | Suits & Tuxedos| Prom & Wedding Collection
Luke’s 32 Bridge Luke's 32 Bridge
Nashville Auto Care Nashville Auto Care
Cannon Kirk Ford of Springfield Cannon Kirk Ford
BLO Blow Dry Bar Blo Cool Springs
Sonata Bank Sonata Bank
Jonathan’s Grille Jonathan's Grille

See you soon, Heart Families! 🫶🏼

Stay tuned for lots of footage from our event. We can’t wait to share it all with you! 💙

NashvilleZoo CommunitySupport

09/02/2026

We were told at 30 weeks pregnant that our baby, whose gender was a surprise, was most likely to have Trisomy 21 (Down syndrome), along with a complex heart defect called Tetralogy of Fallot with an AV canal defect.
Irene was born and spent the first few weeks of her life in the NICU while her medical team worked to regulate her oxygen levels and determine the best plan for her care. She was then moved to the PICU, where she underwent a heart catheterization that was unfortunately unsuccessful. She ultimately had a BTT shunt placed, which allowed her to come home for the first time at just over two months old.
Her amazing cardiac team at Wellstar Children’s Hospital of Georgia became such an important part of our journey. They checked on and monitored Irene’s development and cared for our whole family on a weekly basis as we navigated caring for her between surgeries. Their support, knowledge, and encouragement meant so much to us during those difficult months.
Irene continued to grow and gain weight as we prepared for her complete heart repair, which took place when she was eight months old. There were certainly some ups and downs along the way, but Irene always fought through them with a smile!
Today, Irene is the biggest joy in our lives and brings so much happiness to everyone she comes in contact with. She has taught us so much about strength, perseverance, and celebrating every little milestone. We are incredibly grateful for the medical team who has cared for her and for the gift of getting to watch this sweet, strong girl grow and thrive.

08/29/2026

Today we honor the birthday and legacy of Dr. Vivien Thomas, born August 29, 1910.

His groundbreaking work helped make the first successful treatment for “blue baby syndrome” possible and changed the future of congenital heart surgery forever.

Despite facing enormous barriers, Thomas became one of the most influential figures in cardiac surgery, helping develop surgical techniques and training generations of surgeons.

So much of what is possible for children born with congenital heart defects today was built on the work of pioneers like Vivien Thomas.

His story is also a reminder of why we do what we do at The Brett Boyer Foundation. Progress in congenital heart disease has always come through research, innovation, perseverance, and people willing to push medicine forward. We continue that work today by funding CHD research, supporting families and providers, and helping create better options and better outcomes for the children who come next.

We honor Dr. Thomas not only for what he changed in his lifetime, but for the lives his work continues to impact generations later. 🤍

08/27/2026

Veronica Victoria was born with congenital heart defects, including ASDs, PFOs, and VSDs. We always knew about her heart, but for most of her childhood, we never imagined the journey that was waiting for her.

About a month before her 15th birthday last year, we learned that one of her ASDs had grown large enough that it needed to be closed. In July, we traveled to Monroe Carell Jr. Children’s Hospital at Vanderbilt expecting her to have the defect closed through a cardiac catheterization.

Instead, that day changed everything.

During the procedure, her doctors determined that placing a closure device was too dangerous because of the location of the defect near the top of her heart. There was a risk that the device could dislodge inside her heart, so we learned that day that our daughter would need open-heart surgery.

Veronica Victoria also had severe pectus excavatum, a chest-wall deformity that left very little space for her heart. Her doctors decided that she would need a combined surgery: open-heart surgery to repair her heart and a modified Ravitch procedure to reconstruct her chest wall. We were told that this combination had never before been performed at Vanderbilt Children’s Hospital in this way.

But before we could even get to that surgery, her heart had another challenge for her.

She began experiencing episodes of an extremely fast heart rate. In October, she underwent her first cardiac ablation. About a week and a half later, her episodes became even worse. One day, her heart would not come out of the abnormal rhythm, and I had to take her to the emergency room. The medical team administered adenosine to interrupt the abnormal electrical rhythm and allow her heart to return to a normal rhythm.

As her mom, I will never forget standing there watching the monitors and seeing the medical team surrounding my child, prepared to intervene if her heart did not return to a normal rhythm. Those few seconds felt like an eternity. Thankfully, it did.

Later that same month, on Halloween, when a 15-year-old should have been having fun with her friends, Veronica Victoria was back at Vanderbilt undergoing her second ablation.

Afterward, she developed tremendous shoulder pain. The abnormal fast heart rhythms were still not completely resolved, and the pain became so severe that shortly before her scheduled open-heart surgery, we were back at Vanderbilt. Doctors could not determine exactly why she was hurting so badly, so they used medications to control her pain and get her safely to surgery.

In November, we arrived for the surgery we had been preparing ourselves for.

But the doctors discovered something none of us expected.

Veronica Victoria had approximately 500 mL of fluid around her heart and significant inflammation. Her heart had very little room. Her surgeon had to decide whether it was even safe to proceed with such a major operation. After consulting with the other doctors, the team decided to continue.

Because the tissue around her heart was so inflamed, they could not use her own pericardial tissue as originally planned. Instead, they used a bovine patch to close an approximately 2 cm ASD along with the smaller surrounding defects.

During the same operation, they performed another ablation and a modified Ravitch procedure to repair her severe pectus excavatum. Six titanium bars were placed in her chest to reconstruct her chest wall and finally give her heart more room.

Her surgery began around 8:00 in the morning. We didn’t get to see our daughter until approximately 11:30 that night.

Those 15½ hours were the longest hours of my life. I was terrified that I might never see my child again.

But Veronica Victoria fought.

She spent about a week in the hospital, and we stayed near Vanderbilt for another week afterward in case complications developed before finally bringing her home.

We hoped the hardest part was behind us, but her journey wasn’t over.

In January of this year, she needed another procedure because of a pleural effusion, fluid that had accumulated around her lung. Then in February, she began experiencing significant pain in her shoulder, wrists, and feet. At times, the constant pain made it difficult for her even to concentrate at school.

By the end of April, we were back in the hospital when her shoulder pain reached 10/10. Fluid had once again developed around her lung. There were more tests, more specialists, more medications, and more questions. Her cardiologist referred her to rheumatology, and additional testing was done to try to understand why her body continued struggling months after her open-heart surgery.

We still don’t have all the answers.

Today, thankfully, her shoulder and wrist pain are gone, although she continues to struggle with pain in her feet and remains on medications. Our greatest hope now is that after everything her body has endured, her heart will finally have the time and space it needs to heal.

Through all of this, she has continued trying to live the life of a normal teenager. She has gone to school while hurting. She has missed time with friends for hospital rooms, procedures, medications, appointments, and recovery. She has faced things at 15 and 16 years old that most people will never experience.

There have been moments of fear, pain, frustration, and so many unanswered questions. But there has also been incredible strength.

When I look at Veronica Victoria, I don’t just see the scars on her chest or everything that has happened to her heart.

I see my daughter.

I see a fighter.

I see a Heart Warrior. ❤️

08/26/2026

Sometimes a miracle begins with something so small you almost miss it.

A family day at Dollywood. A happy baby sleeping on her dad. A tiny bump on her ribs.

And then, suddenly, everything changed.

Pearl was diagnosed with ALCAPA, an incredibly rare congenital heart defect that had already caused her heart to become severely enlarged and put her into heart failure.

Within days, she was in surgery fighting for her life.

Her parents were told this would be a marathon, not a sprint. And for 24 days in the PCICU, they lived that truth one day at a time.

Through the fear, the waiting, the setbacks, the prayers, and the slow steps forward, they kept hearing the same words:

Slow and steady.

Sometimes God doesn’t calm the storm.

Sometimes He carries you through it.

Pearl is here because someone noticed something that didn’t look right. Because a doctor made one more phone call. Because a surgeon didn’t give up. Because an entire team fought for her.

And because, through every moment, her family believed God was there.

This is Pearl’s story. ❤️

📷 Suha Dabit Photography

FaithOverFear PrayerWorks MiracleBaby VanderbiltChildrens PCICUJourney SlowAndSteady HopeInTheStorm OurLittleFighter TheBrettBoyerFoundation

08/19/2026

Jaxon’s journey began before he was even old enough to understand just how hard he was fighting. At only 6 days old, our newborn son underwent open heart surgery at Cincinnati Children’s Hospital.
As his parents, nothing could have prepared us for that experience. One moment we were simply Mom and Dad, excited about bringing our baby into the world, and the next we were learning medical terminology we never wanted to know, watching monitors, waiting for updates, praying, and putting our son’s life into the hands of people we had only just met.
There is a helplessness that comes with watching your child fight for his life. As a dad, I wanted to protect my son and fix whatever was hurting him, but this was something I couldn’t fix.
Jaxon had to fight.
And fight he did.
Our family experienced fear, uncertainty, surgery, setbacks, long hospital days, countless prayers, and emotions that are still difficult to put into words. Through it all, we were surrounded by incredible people. The doctors, nurses, and entire team at Cincinnati Children’s Hospital gave Jaxon extraordinary care, and our family also experienced the support of Ronald McDonald House during a time when we desperately needed somewhere to turn.
Jaxon’s journey also brought my own childhood full circle.
I underwent surgeries myself as a child. I was so young that I don’t remember everything my parents went through during those experiences. But when Jaxon was born, suddenly I wasn’t the child lying in the hospital bed anymore.
I had gone from the patient to the caregiver.
I was now the father standing beside the bed, scared for my own child.
For the first time, I began to understand what my parents must have felt watching me go through my own surgeries. That realization became an important part of how I processed everything our family experienced with Jaxon.
Eventually, I knew I needed to put our story into words.

I wrote Jaxon’s Journey: A Story of Fear, Faith, Family, and Hope, telling our family’s experience through the eyes of a father.
I had never set out to become an author. I wrote the book because somewhere there is another mom or dad receiving a diagnosis they never expected. Another parent is sitting beside a hospital bed wondering whether their child is going to be okay. Another family is scared, exhausted, praying, and trying to figure out how they’re going to make it through the next hour, much less the next day.
I wanted that family to know they aren’t alone.
The book shares the fear and difficult moments honestly, but ultimately Jaxon’s story is about faith, family, hope, and the incredible strength of a little boy who fought through more in his first days of life than many people experience in years.
Our experience also left us wanting to give something back. A portion of the royalties from Jaxon’s Journey supports Ronald McDonald House of Southwest Ohio, helping support other families navigating their own medical journeys.
Today, when we look at Jaxon, we don’t just see a child who underwent open heart surgery at six days old.
We see our Heart Warrior.
We see the little boy who changed our family, strengthened our faith, taught his dad what courage really looks like, and ultimately inspired a story that we hope reaches another family exactly when they need it.
This is Jaxon’s Journey.
And we’re incredibly grateful that we get to continue watching him write the next chapters of it.

08/18/2026

We are officially SOLD OUT!
And we couldn’t be more excited!

This year, we doubled the size of CHD Community Day at the Zoo so even more heart families can come together, connect, and make memories outside of the hospital. It’s a day to step away from the medical world for a little while and simply enjoy being together as a community.

We’re so excited for this year’s event and can’t wait to see all of our heart families there!

Stay tuned as we get closer to an amazing day together! 💛🐝

08/17/2026

Ky’s story didn’t start in a great way, with him immediately being placed in foster care. However, his life beginning this way was definitely God’s intervention. He knew that Ky was meant to be a part of our family, and we loved him from the moment we brought him into our home.

Finding out at 4 months old that he had Dilated Cardiomyopathy and was already in severe heart failure, without ever knowing he had a heart condition, was hard on us all. But now I can share how far this brave boy has come since my last submission. That covered his first surgery, in June 2024, when he had the LVAD placed as a bridge to transplant.

He was then listed in July 2024 for transplant, and we spent 135 days waiting inpatient before we received the phone call on November 12th that they had found the perfect heart for Ky. Our sweet baby went down for surgery the afternoon of the 13th, and his heart took its first beat inside his chest a little after 1 a.m. on November 14th.

After that day, things progressed faster than we could imagine. Some small complications, like fever, feeding tube issues, and medication withdrawal, were definitely a battle, but our boy was discharged from Vanderbilt just 11 days post-transplant.

Since then, his life has been like something we could never have even dreamed of. Within 5–6 months, he went from not eating one bite of food to practically eating everything in his sight. He quickly learned to walk, climb, play, ride his balance bike, and talk more and more every day.

We are now a year and a half post-transplant, and watching him grow and thrive is truly a gift from God. He is the sweetest boy. He will brighten anyone’s day.

At 3 1/2 years old, he has spent 267 nights in the hospital over 9 different admissions. Some of those were really rough times. Not knowing if our boy would make it, watching our baby with breathing tubes, chest tubes, and wires everywhere.

However, there was never a moment God wasn’t with him or with us.

Transplant was not a fix-all. He has a lifetime of obstacles and the unexpected ahead of him, but because of someone making the impossible choice on their hardest day, our boy has a chance.

We are forever grateful to them and to God.

📸 Suha Dabit Photography

08/14/2026

My name is Mae Wilkinson, and I am a Lead Pediatric ECMO Specialist at Johns Hopkins Hospital. I have spent the past 28 years working in the Pediatric and Pediatric Cardiac Intensive Care Units (PICU/PCICU). As a licensed respiratory therapist, I initially pursued becoming an ECMO specialist because it presented an opportunity early in my career to develop a highly specialized skill set and advance professionally. However, once I began working with ECMO, it became much more than a career advancement. I developed a genuine passion for caring for children with complex congenital heart defects. The intricacies of these conditions and the unique challenges each patient presents continue to inspire and motivate me. No two patients are ever the same, and that constant opportunity to learn, problem-solve, and make a meaningful difference in a child's life is what has kept me passionate about this work throughout my career.

What truly inspires me are the children and their families. ECMO is a lifesaving therapy, and being able to provide that level of support for a child and their loved ones, whether they are awaiting a heart transplant, recovering from surgery, or a newborn in need of critical care, is an incredible privilege. Just as important as caring for the patient is caring for the family. I want parents and caregivers to have the peace of mind that their child is receiving the highest level of care, allowing them to step away when needed to care for themselves, their other children, or the responsibilities waiting for them at home. Life doesn't stop outside the hospital, and giving families that reassurance is one of the most meaningful parts of my role.

Every year, we host a holiday party for our ECMO survivors and their families, and it is my favorite event of the year. There is nothing more rewarding than seeing these children return healthy and thriving, hearing about everything they have accomplished, and watching how much they have grown. Reconnecting with their parents and family members and seeing the joy on their faces is a powerful reminder of why I chose this profession and why I continue to do this work.

These children and their families have taught me some of life's greatest lessons. Their resilience, strength, and courage have shown me the importance of making every day count. None of us is guaranteed tomorrow, so I try to live each day with purpose, offering a kind word, giving a compliment, saying hello, or telling the people I love how much they mean to me. Those small moments matter, and I never want to miss the opportunity to make a positive difference, both inside and outside the hospital.

I believe the Brett Boyer Foundation is so important because families need a strong support system throughout their entire journey. Whether they are new parents, transplant families, or caring for a child with a congenital heart condition, having someone who understands their experience and can answer questions or simply offer reassurance is invaluable. Questions don't end when a family leaves the hospital, they often begin there. Families need a trusted community they can turn to when they're wondering, "Is this normal?" or "What happens next?" That support is just as important months and even years after surgery or hospitalization as it is during those first critical days. The Brett Boyer Foundation creates a unique community where families can connect with others who truly understand what they have been through.

I also think it's important for the children themselves to have opportunities to connect as they grow older. There is something incredibly meaningful about being able to talk with someone who has lived through a similar experience. Children and young adults with congenital heart disease can offer each other understanding, encouragement, and perspective in a way that few others can. Those relationships can provide lifelong support and remind them that they are never alone in their journey.

Mae Wilkinson, BSRC, RRT
Lead Pediatric ECMO Specialist
Pediatric ECMO and Respiratory Services
The Johns Hopkins Childrens Center

08/12/2026

My son Jayden Gladden is 4 years old, and he is my little heart warrior.

During my pregnancy, I was diagnosed with hypertension, and after Jayden was born, he was also diagnosed with autism. When Jayden entered this world, we were given a life expectancy that no parent ever wants to hear. They told me my son may only have two years, but Jayden is now four years old and continues to prove that he is stronger than anyone could have imagined.

Jayden was born with Hypoplastic Left Ventricle, and he has already faced so many challenges. Before the age of one, he had two open-heart surgeries, around 6 to 8 months old. He continues to need catheter procedures because his lung pressures are so high. Right now, he is not able to have the next stage of his heart surgery because of his high lung pressures and complications with the valves in his heart.

But every day, Jayden puts a smile on everyone’s face. His larger-than-life personality makes everything worth it. He lights up every room he enters and reminds everyone around him how special life truly is.

Jayden loves music, cars, playing with his great-grandma, and his stuffed animals. He may not be able to walk or speak because he is nonverbal autistic, but he has shown me a strength that I never knew was possible.

The hardest part of this journey has been doing it alone. I was by myself with Jayden from when I was pregnant with him, facing the unknown and carrying the fear of every surgery. Not knowing if he would make it through or if each procedure would create more challenges has been one of the scariest parts of this journey. He is my heart, and I don’t know what I would do without him.

If I could share one thing with other heart families, it would be to never be afraid to advocate for your child. Ask questions. Ask doctors to explain things in a way you can understand. The medical words can be overwhelming and scary when you don’t know what they mean. Remember, there will be hard days, but the good days can outweigh the bad.

Jayden has taught me so much. He has taught me patience, strength, and that life is too short to stress about the little things. Watching everything he has gone through and knowing I

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