Lexi’s Lifeline: A Story of Hope and Resilience

When Lexi McCullough began feeling unwell, her father, Toby, initially chalked it up to “normal cold stuff.” With a cough in the midst of winter, it seemed like a typical seasonal illness. However, when Lexi started tugging at her ear persistently, her parents knew it was best to seek medical attention. Urgent care seemed like the logical first step, suspecting an ear infection. To their surprise, the doctors couldn’t pinpoint the issue despite examining her throat, ears, nose, and sinuses, all of which appeared normal. Concerned by the lack of clarity, the doctor opted for a chest x-ray. This revealed the shocking truth: Lexi had an enlarged heart.

The McCulloughs went to the hospital immediately. By this point, “everyone was scared,” according to Toby. “It was a really rough time.” They received the devastating diagnosis of dilated cardiomyopathy, a condition completely unexpected given their lack of family history with heart disease. Despite efforts to treat her with medication, Lexi’s condition deteriorated rapidly. The doctors came to the conclusion that a heart transplant was her only hope.

Toby recalls the feeling of that moment as “pure shellshock. I was really angry.” He was so filled with rage that when the doctors handed him a book on what to expect when it comes to transplant, he threw it against the wall. After his self-described “temper tantrum,” however, he found his focus and said, “Let’s do this. We got a baby to fix.”

Road to Recovery

Hooked up to 7 different IVs, Lexi’s demeanor remained unchanged. She became “a celebrity in the ICU” according to her father. She continued to play, laugh, and jump around despite the medical peril she found herself in. While Lexi was “a little rockstar,” her parents were switching out watching her every 2-3 days so they could take care of her older sister Scarlett and make sure her routine stayed intact.

Toby was 90 minutes away from the hospital at a fundraiser for Lexi when he got the call that her heart was on the way. He remembers “breaking a few speeding laws” as 90 minutes turned into under an hour on his mad dash back to his daughter.

They received the heart, and Lexi went into her surgery. On what was the “scariest day of their life,” Lexi’s parents waited for hours, hoping their daughter would emerge from surgery with a healthy heart. In the end, the doctors were ecstatic with how the surgery went, and everything went off without a hitch. They kept Lexi asleep for a couple more days, but as soon as she was awake, she was up and walking the halls. Just five days later, the McCulloughs got to take their daughter out of the hospital. After a month in temporary housing nearby, they finally got to go home.

Since then, Lexi has only had a handful of minor health scares due to being immune-suppressed. Her heart has remained healthy. Lexi considers her journey a “blessing in disguise. Transplant has been my entire life; I’ve never known anything else, and I would not be the same person I am today without it,” she shared. 

A Life Rooted in Transplant

After her transplant, Lexi and her family became heavily involved with GTF. They attended as many events as they could. Lexi even got to get up on stage with Tom Glavine at the Spring Training event. Toby remembers that “the biggest thing GTF helped with was support. They were just there with info and sympathy whenever we needed it.”

Lexi even ended up being the poster child for a couple of GTF advertisements herself. Since a young age, telling her story has always been something she’s enjoyed. She shared that “it’s an opportunity to give people hope, to show them that if an itty-bitty little baby can have a transplant and grow up to live an amazing life and do everyday things, so can they.”

This month, April 2024, the McCulloughs celebrated the 20th anniversary of Lexi’s heart transplant. They threw a party in their hometown where the village of people who supported Lexi decades ago could reconvene to celebrate her again. To Lexi, the 20th anniversary is “just another day.” Still, her father is “over the moon.” He shares that “statistically speaking, it’s a big milestone. Lexi has always been so resilient mentally and physically, so it’s great to be able to celebrate her.”  

A New Purpose

Lexi knows she received a second chance at life. She explains. “I want to give life my all. I think about the people who had to lose their child for me to receive my heart, and I want them to know it wasn’t a waste. I listen to my doctors and take every precaution to maintain my heart but still make an effort to live my life to the fullest at every opportunity.” 

When asked what advice she’d give to a transplant patient, Lexi stated that “the whole process is scary. It isn’t easy, but with a good team behind you, there’s nothing you can’t do. People have told me my whole life that I can’t do things. If you think I can’t, just watch me.” She provided us with a quote her mom shared with her once that she believes represents her perfectly. “They whisper to her; you cannot withstand the storm. She whispers back, I am the storm.”

Learn more about GTF’s upcoming events here: https://gatransplant.org/our-events/