MOORHEAD — Becki Wheeler’s world began to unravel the day her 14-year-old daughter was diagnosed with mononucleosis.

At the time nothing seemed alarming.

After all, “Lots of people have had mono,” Wheeler said.

But Wheeler eventually would learn that the viral infection that caused her daughter Emma’s mononucleosis triggered a rare, life-threatening disease — so rare that, according to estimates, fewer than 100 cases are diagnosed worldwide each year.

Some symptoms of the disease, in fact, are similar to mononucleosis. Emma was fatigued, lethargic, had body aches and a fever.

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“They said just to run its course,” Wheeler said, recalling the clinic doctor’s advice.

It was advice the family welcomed. Emma was happily just starting her freshman year at Bismarck’s Legacy High School.

Instead of getting better, however, Emma’s condition got worse. She was unsteady on her feet and had difficulty handling stairs.

One day at home, Emma got up to look at a bird outside the window and said, “Momma, I can’t see.”

They rushed to a walk-in clinic, then to a Bismarck hospital emergency room. It was the beginning of a medical odyssey and a family ordeal.

Doctors first suspected that Emma had lymphoma, a form of cancer. But complications soon developed, and she was taken by ambulance to Sanford Children’s Hospital in Fargo.

There, after several days of tests, the doctors announced that they had good news and bad news.

The good news was that Emma didn’t have cancer. “Boy that’s a relief,” Wheeler said, recalling her reaction. Her buoyant mood was quickly shattered. The doctors said she had something worse, something called HLH — hemophagocytic lymphohistiocytosis, a condition in which the body goes haywire and produces too many activated immune cells.

Paradoxically, the body’s immune system is severely weakened as a result, allowing infections to run wild.

“It’s like fire,” Wheeler said. “It consumed her body.”

* * *

Emma’s early life was not easy. She became estranged from her biological father, her mother said, leaving a void in her life.

She had an outgoing, effervescent personality. She introduced herself to the neighbors and made sure to talk to the elderly man eating alone at a restaurant. In the hospital, where she would spend most of the last two months of her life, she became a social magnet.

“She embraced life,” Wheeler said. “Everybody knew Emma.”

Emma Wheeler in a light moment during her hospitalization. She contracted a rare disease, HLH, which causes the immune system to produce too many activated immune cells. She died in 2017, but her mother wants her story to help others. Special to The Forum
Emma Wheeler in a light moment during her hospitalization. She contracted a rare disease, HLH, which causes the immune system to produce too many activated immune cells. She died in 2017, but her mother wants her story to help others. Special to The Forum

Becki met Rex Wheeler when Emma was 8. The couple got married six months later, moving from Fargo to Bismarck, where Becki got a new job in real estate and they moved into their dream home.

Emma called her stepfather T-Rex. One year she announced that she had the perfect birthday gift for him: “Me. I want to give you me. Can Dad adopt me?”

At age 10, she got a dog, a Labrador retriever named Willie. “It totally changed her life,” Wheeler said.

Before the family knew Emma was sick, Willie suddenly began acting strangely, urinating around her room, something he never did before or since. In hindsight, Wheeler now believes the dog sensed something was wrong and was trying to alert family members.

“I think he was seriously trying to say something is wrong,” Wheeler said.

* * *

The fire inside Emma’s body kept burning. Doctors gave her an immune booster, but it had no effect.

More complications piled on. She developed a rare fungal infection in her lungs, treatable only by surgery, but she was too weak to have the operation.

She also developed cancer, non-Hodgkin's T-cell lymphoma, which doctors began treating in the hope it would go into remission.

As the diagnoses kept coming, and all the tests, medications and procedures were unable to stop her deterioration, Emma asked her mother softly, “Mom, what if they can’t fix me?”

Still, she never complained, despite the pain and discomfort of her illness. “She was a trouper,” Wheeler said.

Emma Wheeler proudly displays a long beaded string. Each bead represented a test, procedure or other milestone in the treatment of her HLH, a rare disease that took her life at age 14. Special to The Forum
Emma Wheeler proudly displays a long beaded string. Each bead represented a test, procedure or other milestone in the treatment of her HLH, a rare disease that took her life at age 14. Special to The Forum

Then came yet another turn for the worse, announced by stabbing back pains. Emma’s kidneys were failing.

Doctors at Sanford decided she should be flown by air ambulance to the University of Minnesota Masonic Children’s Hospital in Minneapolis.

Emma’s other organs began shutting down. She had to be intubated to breathe, and communicated by hand squeezes: one squeeze meant yes, two meant no.

Those last few days, Emma’s dogs were allowed to visit her in the hospital. Willie climbed into bed to be close and wouldn’t leave. Another dog, Zeke joined them.

Emma Wheeler, who shaved her hair while undergoing chemotherapy, visits with a family dog. Special to The Forum
Emma Wheeler, who shaved her hair while undergoing chemotherapy, visits with a family dog. Special to The Forum

The doctors had run out of treatments to try. “There was nothing more we could do,” Wheeler said.

She climbed into Emma’s bed to hold her daughter. On Nov. 14, 2017, six days after being airlifted from Sanford to the U of M children’s hospital and 55 days after her HLH diagnosis, Emma died.

* * *

A few days after Emma died, the Wheelers decided to attend a Bison home football game for a diversion. While watching from the stands, Becki stood up, lost her balance and fell. She was taken by ambulance to the hospital, where she stayed for several days.

Doctors attributed the medical episode to stress.

“There’s so much a part of me that’s gone,” she said. “Emma was my why. Now that piece of me is gone, so I got lost.”

Now, 21 months later, the pain of bereavement is not so raw. “There’s a transition period,” she said. “Tears can be a release of energy.”

Last fall, the couple moved to Moorhead to be closer to friends and family. Having sold their house, and recovering financially from quitting their jobs during Emma’s illness, they’re living with a relative.

To keep Emma’s memory alive and to help others, Wheeler wants to spread awareness of HLH and to help parents who are coping with serious illness or the loss of a child. They’re also training their youngest dog, a chocolate Lab named Cocoa, to be a therapy dog.

Rex and Becki Wheeler talk July 15 at their Moorhead home about the loss of their 14-year-old daughter, Emma, in 2017 due to a rare disease. Michael Vosburg / Forum Photo Editor
Rex and Becki Wheeler talk July 15 at their Moorhead home about the loss of their 14-year-old daughter, Emma, in 2017 due to a rare disease. Michael Vosburg / Forum Photo Editor

She’s spoken to groups, including the Make-A-Wish Foundation in Fargo and Bismarck, Sanford Health Foundation, 61 for 61, a Roger Maris fundraiser, and wants to write two or three books to help people cope with serious illness and loss.

Recently, after speaking to a group, a doctor in the audience approached Wheeler after her talk and thanked her for reminding him why he became a physician.

“That’s probably going to impact a family’s life,” she said.

She hopes to heighten awareness not just of HLH, but of the importance of embracing life. “Our kids need us more today,” Wheeler said, “than they ever have needed us.”

The Wheelers flew to New York City for a gathering of HLH doctors, families and survivors. On Monday, July 22, a group of them plan to stand in the crowd outside the studio of NBC’s "Today" show.

She plans to hold up a picture of Emma.

Rex and Becki Wheeler holding a photo of their daughter Emma, who died of a rare disease called HLH, while in New York City for a gathering of HLH doctors, survivors and family members. Photo special to The Forum
Rex and Becki Wheeler holding a photo of their daughter Emma, who died of a rare disease called HLH, while in New York City for a gathering of HLH doctors, survivors and family members. Photo special to The Forum