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Minnesota sixth-grader needs heart transplant -- but she’s not sick enough

Shianne Stull has been diagnosed with a heart condition that will eventually require her to have a heart transplant.1 / 2
Lisa Johnson, right, said she has to be strong for her daughter, Shianne Stull, who has been diagnosed with hypertrophic cardiomyopathy, while she also tries to deal with her daughter's illness and uncertain future.2 / 2

HAWLEY, Minn. -- Until last summer, Shianne Stull was a typical, healthy preteen girl.

Then July came and everything changed for Shianne and her family.

Now a sixth-grader in Hawley, Shianne has been diagnosed with hypertrophic cardiomyopathy, a congenital heart condition she was born with but no one knew about until last year.

“She started having episodes where she would collapse and pass out on us,” said her mother, Lisa Johnson. “Within a seven-day stretch, she had four trips via ambulance from Hawley to Fargo.”

Hypertrophic cardiomyopathy is described as the second most common form of heart muscle disease. “Hypertrophic” refers to an abnormal growth of muscle fibers in the heart.

With hypertrophic cardiomyopathy, the thick heart muscle is stiff, making it difficult for the heart to relax and for blood to fill the heart chambers.

The only cure, Johnson said, is a heart transplant. But Shianne’s situation has to worsen for her to be listed on a transplant list -- something that frustrates her mother.

“This is where I get angry with the doctors, but I have to trust to the best of my ability,” she said.

A fundraiser for Shianne and her family is set for May 3 in Downer.

Doctors first thought Shianne’s episodes might be seizures and put her on medication.

“Then the last time, a Sunday morning, she was completely unresponsive. I couldn’t wake her up,” Johnson said of her daughter’s collapse.

She spent four days in the hospital undergoing tests. After a second reading of her electrocardiogram, doctors saw something abnormal with her heart.

They then got the news from a cardiologist that Shianne had hypertrophic cardiomyopathy. By about August, she was sent to Children’s Hospital in the Twin Cities for an MRI.

“They called and said, ‘We have the results but we want to see you. We’re not giving you the results over the phone.’ ”

Besides the hypertrophic cardiomyopathy diagnosis, Shianne also was listed as high risk for sudden cardiac death.

“They told me that day that she was not going home but instead going straight down to Children’s in the Cities for additional testing,” Johnson said.

After four days, they were sent home to “try and get back to a normal life.”

After a checkup with their cardiologist, they were sent for a second opinion to Mayo Clinic in Rochester. By this time, it was October.

Doctors there decided Shianne needed an ICD -- implanted cardiac defibrillator, or pacemaker -- “to keep her safe.”

Since that time, Shianne has been back at school, trying to be a normal sixth-grader.

“However, at any given time, her situation can change drastically in a matter of just overnight,” her mother said.

Shianne’s not allowed to be in any sports, and Johnson said her daughter gets tired easily. She’s on a medication to maintain heart function and must have checkups every three months because she is high risk.

Shianne has gone through three surgeries, and doctors hope to hold off on anymore through her adolescent years to reduce the risk of scar tissue in her heart.

“They’re trying to sustain and maintain at this point,” Johnson said.

To deal with emotional stress, Shianne visits with a counselor weekly, as does Johnson.

“She got a lot handed to her all at once, and her whole lifestyle has changed,” Johnson said of her daughter.

For herself, Johnson said she must be strong for her daughter, but she also must process what’s happening to her child at the same time. She said it’s been possible with a strong support system.

“We can tell what our breaking points are with everybody and when to step in and kind of take over so the other person can step back and breathe a little bit, have their panic behind the scenes where she (Shianne) can’t see it,” Johnson said. “She knows we’re scared for her, but if we don’t show it, she’s not as bothered by it.”

As scared as they all are, Johnson said there are people who have it worse than they do.

“We just have to be thankful for what we have and take one day at a time.”

‘May Day for Shianne’

A benefit for Shianne Stull, “May Day for Shianne,” is scheduled for May 3 in the Mainline Bar and Grill in Downer, Minn.

A kids’ carnival is scheduled from 1 to 4 p.m., a silent auction from 1 to 6 p.m. and live entertainment starting at 7 p.m.

The meal consists of pulled pork, coleslaw, chips and cake.

Money raised will go to both medical and nonmedical expenses the family has incurred, including travel expenses from trips to the Twins Cities and Rochester, Minn.

Donations also are accepted at any Bell State Bank location.