(WAVY) — “Our new Miss Virginia’s Outstanding Teen for 2022 is … Roanoke Valley, Ayana Johnson!” And before the announcer could finish, the crowd at Roanoke’s Berglund Center went wild.

On June 25, 16-year-old Ayana Johnson of Suffolk, dropped to her knees, a few tears falling from her eyes. She had just finished first, ahead of more than a dozen other highly competitive contestants, to win the coveted title. In that moment, she may have wondered if she’d be able to get up and accept the crown.

Yes, she survived the grueling week of preparation for the pageant, including promotional photo shoots, changing outfits, guest appearances, endless interviews and hanging out with her friendly competitors.

However, the bigger challenge was the one out of the public eye: Johnson’s very private and often misunderstood battle with sickle cell anemia.

The debilitating blood disorder deprives her red blood cells of oxygen and changes the cell shapes to “sickles” that go on to block blood vessels.

It can be so painful, Johnson can only get relief after a run to the emergency room, blood transfusion, and days in a hospital bed.

“I actually suffered with a pulmonary embolism and acute chest syndrome, which essentially is a crisis in your chest, for sickle cell patients,” she said.

That was in the days leading up to the pageant. That episode was one of many during the past school year.

Johnson was diagnosed with sickle cell disease shortly after birth. She had her first “crisis” at 5 years old.

“When I was about 8 years old I was in a doctor’s appointment and I saw the difference between the resources provided for the different departments of the hospital, versus those provided for hematology patients,” Johnson said. “And that’s a gap that I want to bridge.”

That bridge would mean a sickle cell specialist based here in Hampton Roads, so patients like Johnson wouldn’t have to travel to Richmond and beyond for care.

Dealing with the pain episodes sometimes gets a little easier with distraction. Johnson has a favorite stuffed animal and companion.

“This teddy bear … her name is CoCo,” she said.

The cream colored fluffy little guy — a gift from Children’s Hospital of the King’s Daughters in Norfolk — has been in Johnson’s arms since she was two months old.

Johnson has another comfort item: an 18-inch red heart-shaped pillow she calls a “Hope Cell.” She’s made, and given away, about 30 Hope Cells. Funding for materials comes from donations to her own non-profit organization.

“I sign my name on the back and put a little card in there,” Johnson said, describing a card that offers the kind of encouragement that she has needed to soldier through the challenges.

Those challenges include academics at Nansemond River High in Suffolk, the Governor’s School for the Arts, violin and dance practice, and numerous events where she advocates for more resources for the estimated 500 sickle cell anemia patients in our region. The lack of specialists, and awareness of patient needs, Johnson says, has meant having to travel to Richmond, Washington and beyond for specialized treatment.

Johnson plans to carry the message of Sickle Cell Warriors to Dallas as she competes in the national competition, Miss America’s Outstanding Teen, which runs from Aug. 10 through Aug. 12.

The national audience will be great, but Johnson’s really hoping to reach children who are currently going through similar health challenges.

“I think I’m just trying to have the legacy of being able to have a chronic illness but still being able to show little girls that you can do this, too,” she said.

To find out more about Johnson’s efforts, email her at ayanashopecells@gmail.com.