Sickle cell is widely misunderstood, even by many health care providers, so Peterson is making TikTok videos about it and about her journey to try and change that. Sickle cell patients in pain crises often run up against skeptical providers when they seek care because they look normal.

"Nothing shows on the outside," Peterson said.

Seemingly normal things can be difficult for them. For instance, flying can cause terrible pain for patients because of the air pressure or temperature change, butPeterson has still managed a few short hops with her younger brother Emmanuel, who is a pilot.

Olivia Peterson is no stranger to the pain crises. And even seemingly small things, like the weather, can trigger a crippling episode, said her mother, Vanessa, recalling a big 5th birthday party that had been planned. Then a storm front hit.

"We had to call and say, 'Were going to the hospital right now, so were sorry,' " Vanessa Peterson said. "She had her birthday in the hospital."

"Its not the first birthday I spent in the hospital," Olivia Peterson said, but she has learned to laugh about it now.

Vanessa Peterson (left) rests her chin on her daughter Olivia Peterson's shoulder while they sit on a hospital bed at MUSCs Sean Jenkins Childrens Hospital in Charleston on Feb. 8, 2024. Vanessa has been a huge supporter of her daughter over the years, driving her to appointments and sharing a laugh with her whenever possible. The two are very close.

There have been other disappointments along the way. MUSC and other centers have looked at bone marrow transplants for sickle cell patients as a potential long-term therapy, and that is when Jaroscak and Olivia Peterson met five years ago. But without a good donor match, she wasn't a candidate for that clinical trial.

Jaroscak continued with her other treatment, and when the RUBY trial came along and Peterson appeared to qualify, she picked up the phone.

"I called her up and said, 'Olivia, would you like to talk again?' " Jaroscak said.

For Peterson, it was like finding the Golden Ticket in the "Willy Wonka" movies, staring down at her chocolate bar in disbelief.

"I tell you it was one of those moments when you are so ready for something that you are not exactly really ready for it in that moment," she said. "Its right there, at your front door. And youre like, 'Oh, is this really happening right now?' "

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