Essence Leach has displayed tremendous endurance over the last 11 months, fighting off a condition that made her susceptible to infections and excessive bruising and bleeding.

The 9-year-old Fairmont girl was diagnosed with bone marrow failure syndrome shortly after Christmas last year and underwent chemotherapy treatments and a bone marrow transplant this summer.

“It’s hard to think it’s been less than a year when it feels so much longer than a year,” said TaLeah Fitzloff, a close family friend. “She’s been through a lot.”

What Essence experienced during her stay at Children’s Hospital in Minneapolis is visible in a shockingly long string of glass beads, a tangible 50-foot diary that chronicles her medical journey.

“Each bead represents something different,” said Jaime Urban, Essence’s mother. “The black ones are IV pokes or when they accessed her port. The music notes represent music therapy. Yellow is chemotherapy. The silver ones, they represent visits from a wonderful pastor that came twice a week. I don’t know what we would have done, what I would have done without him. He was so kind.”

“It’s taller than my house,” Essence said as she pointed out a couple of large and obviously special beads.

One represents her bone marrow transplant May 29. Another represents the day of her discharge. Bigger beads appear on a regular basis along the strand.

“They are for acts of courage. I gave her one of those every single day because I thought what she was going through required tremendous courage,” Urban said.

The beads of courage will be on prominent display from 4 p.m. to midnight Saturday at a benefit for Essence at the Fairmont Eagles Club, 1228 Lake Ave. Scotty Biggs BBQ will serve pulled pork, macaroni and cheese, and crazy corn for a donation, starting at 4 p.m.

A silent auction from 4-8 p.m. will feature merchandise from the Vikings, Wild and Twins; inspirational homemade wooden signs; hand-crafted barnwood end tables; gift baskets; gift cards; and many other items. Tickets for a 50/50 drawing will be sold until 7 p.m. when a single ticket will be drawn with the winner receiving half the money collected from ticket sales.

Immediately after the drawing, DJ Sparks and DJ Grim of Fairmont will provide music.

An account also has been set up at Profinium Financial of Fairmont.

Watching Essence, an avid gymnast, in constant motion, doing back bends, hand stands and various other contortions, it is difficult to grasp the peaks and valleys of her health since May 17, when she was admitted to Children’s Hospital.

“They started chemo within hours of us getting there,” Urban said. “Even though you try to prepare for it, watching them actually give your child that first dosage is the most gut-wrenching feeling you will ever have in your life.”

Essence underwent 10 days of chemotherapy and was unable to eat after the third day.

“She stopped eating then and didn’t start again until well after she was out of the hospital which was the end of June,” Urban said. “She was in the hospital for 40 days, then out for a week, and then back in for another seven days.

“She got every side effect possible from the chemo. She had zero immune system. She got hives, fevers. She had 105 degree fever for two weeks straight. She had pneumonia. She had infection in her ear. She had infection in her line.”

“But no seizures though,” Essence said.

Throughout her hospital stay, Essence was confined to her room.

And Urban was by her side.

“I think the longest period of days I spent in the room with her, without somebody coming to relieve me, was 17 days in a row,” Urban said. “I couldn’t leave her. She had so many things happen in the hospital, but since then, she’s been doing great.”

After Essence was discharged, she and her mother stayed at the Ronald McDonald House because she had to remain within a 30-minute drive of the hospital. Mom and daughter finally got to return to Fairmont on Sept. 20.

Next week, Essence will go in for her six-month follow-up appointment that involves a bone marrow biopsy, the seventh one she has undergone, and lab tests which require 22 vials of her blood.

“She really wants to go back to school, but that’s up to her doctor,” Urban said. “She will have to get all her vaccinations again, and she can’t be vaccinated until one year post transplant. Any time we go out in public, she has to wear a mask.”

For now, Essence continues to be home-schooled, but her doctor has allowed her to participate in gymnastics practice with the Martin County Magic twice per week.

There’s no magic cure for bone marrow failure, Urban said. Because Essence’s condition was genetic, she always will be at risk.

“It can come back any time,” Urban said. “So we enjoy every single day, even the sassy ones.”