Teen with Rare Genetic Mutation Has Heart, Kidney Transplant Within a Year: 'Not Everybody Who Has This Made It' (Exclusive)

Brooke Sturgis is the seventh person to survive a rare genetic mutation that causes sudden cardiac arrest

• Brooke Sturgis was 19 when she went into sudden cardiac failure, requiring a heart transplant in June 2021 to save her life
• Afterwards, she went into kidney failure — discovering that the cause for her health issues was hiding in her genes
• Sturgis has a rare genetic mutation, and is only the seventh person to survive it. Now, she's an outspoken advocate for organ donation

Brooke Surgis was celebrating the end of her freshman year at her dream school, Savannah College of Art and Design, with a girls’ trip to Hilton Head, South Carolina, in 2021 when she first realized something was wrong. 

“I'm like, everything feels so perfect in life right now. Everything feels too good. I'm at my dream school. I have great friends. I'm sitting on a beach,” Sturgis tells PEOPLE. “I finally felt like I had made it to that point in my life that I was dreaming of.”

“I was so happy. We're sitting there and I'm like, ‘But man, my chest hurts.’ ”

Two weeks later, she was back home in Pittsburgh when what she originally thought was pneumonia hit.

“I'm lying in my bed and I cannot sleep because of how bad my chest hurts,” Sturgis, now 22, says.

Her father took her to the emergency room — and she was promptly admitted. 

By then, “I can't breathe to the point that I have to sit on my hands and my knees to open up my chest wall because that was the only way I could breathe.” she tells PEOPLE.

“The next thing I know there's 15 flashes of white coats just like sprinting into my room telling me, ‘We need to put you under. Something is wrong with your heart.’ ”

Sturgis tells PEOPLE that her heart failed, causing “the rest of my organs…to shut down very quickly”

She was airlifted to UPMC Presbyterian in Pittsburgh, and Sturgis tells PEOPLE her parents were told “She's in critical condition. We don't know how much time she has left.”

Her father called her mother to deliver the grim news. One of Sturgis’s two sisters was home with their mom at the time. 

“She heard my mom screaming downstairs and she knew immediately something was wrong,” she says. “My mom was just like screaming, crying, on the kitchen floor and my sister was talking to my dad and he was just like, ‘She may not make it. You guys need to get down here as soon as possible [to] say goodbye.’ ”

Once she was stabilized, her father broke the news to Sturgis. “The doctors didn't even know what was going to happen to me," she says. "They were just like, ‘Your heart failed.’ “

“Two weeks before all this,” she says, “I was sitting on a beach. I was healthy. I was fine.”

It became clear that Sturgis wouldn’t recover without a transplant — but she qualified for a heart quickly, receiving a donor heart from a 27-year-old man in June 2021.

“I was really sitting there like, 'Oh my, like I can feel every single beat. It was so strong,” she said, adding that it hit home just how weak her heart had been.

“We didn't have an answer for so long as to why my heart failed,” Brooke tells PEOPLE.

But instead of improving, her health continued to decline.

“I had an acute kidney injury [but was told] I'll recover. They said dialysis will just help them recover. So I was in this waiting game."

And so she waited — continuing with dialysis long after she was discharged.

"I was the youngest patient [getting dialysis] by a long shot. Every single patient in there was over 70 years old. That made me realize, 'This doesn't happen to 19-year-olds. Why is it happening to me?' "

@bbrrookkeee

I think about you everyday. I hope you’re at peace. #donatelife #hearttransplant

♬ Always Forever (you and me always forever) - Cults

On November 9, Sturgis received more sobering news: she was in end-stage kidney failure — but her mom, Debbie, was able to be a donor, she says.

"My mom gets the call and we're driving in the car. It's just me and her, and she looks at me and she is just sobbing. I just knew I knew right away that I was going to be ok."

"It's so special to have it be your mom," she adds.

But the question remained: Why did an otherwise healthy teenager need a heart and kidney transplant, all in less than a year?

The answer lied in her genetics — a very rare, and often fatal, mutation, called PPA2.

“Among the 34 individuals, only 6 remain alive,” one study from 2021, said about the mutation.

Related: Mom Seeks Cure for 3-Year-Old Daughter's Rare Genetic Disorder: ‘I Want to Work as Hard as She Does’ (Exclusive)

Sturgis tells PEOPLE she was the seventh. 

“I remember when they told me that it was a genetic mutation. and I remember feeling like a thousand pounds was lifted off my shoulders," she tells PEOPLE. "That was an answer and it was a moment of, 'I didn't do this. This wasn't me.' ”

Today, Sturgis is thriving. "I'm living every single day to the absolute fullest that I can," she tells PEOPLE. "No fear here."

She tells PEOPLE originally had been looking into a career in fashion, she shifted focus to sports and is now interning with the Tampa Bay Rays — and she's become an outspoken advocate for organ donation.

Her close friends and classmates at Savannah College of Art and Design told her story in a documentary they produced, Queen of Hearts, which Sturgis is hoping will further help spread her message of the importance of organ donation. 

@bbrrookkeee

Showing off the heart scars today. And my dialysis catheter. Time to embrace them.

♬ I AM WOMAN - emmy

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“It honestly motivates me to do something with my life — to do something that I really love and to make a big impact on this world. It is a constant motivator to go out and tell my story and to be an advocate for organ donation," she says.

"I carry a big job with me — being number seven — and I don't take it lightly," she says.

After all, as she says, "not everybody who has this mutation or not everyone who needed a transplant made it to be alive."  

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