I’m Dying—but My Heart Is My Favorite Thing About Me’: Woman, 28, Lives with the Same Condition That Took Her Brother at 12

At 28 years old, Bella Salsberry has already faced more grief than most people do in a lifetime. But her story doesn’t start with her—it begins with her great-grandfather, who had hypertrophic cardiomyopathy (HCM), a genetic disease that causes the heart muscle to thicken abnormally, making it harder to pump blood.

The condition passed to her grandfather, but doctors thought it stopped there. Her mom tested negative for the gene before having children, so when she gave birth to four healthy kids, they believed the family was in the clear.

Then, when Bella was 14, her world shattered.

Her 12-year-old brother, Cooper, collapsed during a baseball game from a sudden cardiac event. There was no defibrillator nearby. He died before reaching the hospital.

“You don’t think someone like that is just going to be gone,” she says. “I loved him so much.”

After his death, Bella and her family underwent genetic testing—and discovered she had HCM too.

A Diagnosis That Changed Everything

For years, Bella’s symptoms were mild, and doctors didn’t see major abnormalities in her heart. “It wasn’t a huge priority,” she admits. But at 26, a routine checkup revealed her heart muscle was thickening, and the pressure was building.

“It was shocking,” she says. “Like, ‘Oh, this is real. This is happening.’”

The timing made it even harder: her grandfather was dying of late-stage heart failure from the same condition.

“I was watching the end of what this disease does while I was at the beginning of it,” she explains.

But Bella refused to let fear define her. Instead, she committed to fighting—to maintain her quality of life and raise awareness along the way.

Living with HCM—and Sharing Her Journey

Now, Bella gets blood tests every month to monitor her kidney function and takes two daily medications to manage her HCM. Her biggest struggle is fatigue, especially after late nights or drinking—things most 28-year-olds take for granted.

On TikTok, where she has nearly 30,000 followers, she opens up about her reality—often starting videos with the blunt truth: “I’m dying.” But her message isn’t about fear; it’s about gratitude and awareness.

“My heart is failing, but my heart is my favorite thing about me,” she says in one video. “I’m never going to get better. I’m only going to get worse. But I’m okay with that.”

Her perspective comes from losing Cooper so young.

“When you’re a freshman in high school, you don’t expect your little brother to be taken from you,” she says. “But now, I know that no matter how hard life gets, I’ll get through it. That’s made me okay with my death.”

Her honest, unfiltered approach has built an “outstanding” community—people who relate to being dismissed by doctors or discovering life-saving genetic testing too late.

“Even if it helps just one person, that’s enough,” she says.

Embracing the Unknown

Bella doesn’t dwell on numbers—like her ejection fraction (a measure of heart function) or life expectancy.

“It won’t change what I’m doing,” she says. “The stakes are already high.”

Offline, she switched careers and now works in commercial real estate for her dad. She’s also planning her wedding for next summer—excited to marry her partner of eight years, but heartbroken that Cooper won’t be there to meet them.

Still, she welcomes the unknown, both in her health journey and her TikTok platform, which she calls therapeutic.

“I don’t know where this will lead me,” she says. “And that’s okay.”

Because for Bella, life isn’t about the time you have—it’s about how you live it.