I was born with hypoplastic left heart syndrome (HLHS), a severe and complex congenital heart defect. My parents knew about my diagnosis before I was born, so at 36 weeks pregnant, our family packed up and moved from Alabama to the Children’s Hospital of Philadelphia (CHOP) so I could be born close to the expert care I needed. At just 7 days old, I had my first open-heart surgery, followed by a long and difficult recovery in the CICU.

By the time I was three, I had endured two more open-heart surgeries. Then, at age five, my heart began to fail, and I developed complete heart block. CHOP had run out of options. My family searched for hope and found it at Boston Children’s Hospital, where I received a dual-chamber CRT pacemaker in August 2018. It was the hardest recovery of my life—but it worked. My energy came back, my color returned, and for the first time in years, my family could breathe again.

But a few months later, during a routine check at our local hospital in Alabama, a programming mistake disabled one of the pacemaker’s most important functions. By the time Boston discovered and corrected the error, the damage was permanent. My heart grew weaker, and I developed Stage 3 kidney disease from the prolonged strain.

Now I live with chronic heart failure. I’m not eligible for transplant because of high HLA antibodies, and I’ve recently been diagnosed with pulmonary hypertension—a dangerous complication that makes everything more risky. In 2024, my family moved to Maryland to be closer to Boston Children’s, but with this new diagnosis, even that distance feels too far. Every hospitalization is urgent. Every decision feels weighty.

This summer, I’ll face another big challenge: surgery to replace my fractured atrial pacemaker lead and the generator. This was the toughest surgery I’ve ever had back in 2018, and the thought of going through it again is scary. But without it, my heart won’t be able to do its job.

Still, I’m more than my diagnosis. I’m witty, curious, imaginative, and deeply loving. My family and I have traveled thousands of miles, endured medical trauma, survived mistakes, and kept fighting for every single heartbeat. Because I’m still here—and my life is a miracle worth fighting for every day.