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6th-grader needs heart transplant

Shianne Stull has been diagnosed with a heart condition that will eventually require her to have a heart transplant.

Until last summer, Shianne Stull was a typical, healthy pre-teen 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 summer.

There is a fundraiser for her and her family set for May 3.

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

Doctors thought maybe it was 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 a multitude of tests. After a second reading of her EKG, doctors saw there was 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.’”

Not a good sign.

Not only was she officially diagnosed with hypertrophic cardiomyopathy, she was also 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 and being admitted straight to the hospital,” Johnson said.

They spent four days there and were then sent home to “try and get back to a normal life” because there was nothing more they could do for her at the hospital.

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

It was there that doctors decided Shianne needed an ICD, implanted cardiac defibrillator, or pacemaker, “in order 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.

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

Hypertrophic cardiomyopathy is a disease 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. Shianne’s situation has to worsen for her to be listed on a transplant list though, 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.

Shianne has gone through three surgeries so far, and doctors are hoping to hold off on anymore though 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 of the situation, 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 has to be strong for her daughter, but she also has to process what’s happening to her child at the same time. She said it’s been possible with a strong support system behind them.

“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 though, Johnson said there are people out there that have it worse than they do.

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

The benefit for Shianne, “May Day for Shianne,” is Saturday, May 3, in the Mainline Bar and Grill in Downer.

There will be a kids’ carnival from 1-4 p.m., silent auction from 1-6 and live entertainment starting at 7.

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

Funds raised from the benefit will go to both medical and non-medical expenses that the family has incurred. Johnson said they have travel expenses to cover from the trips to the Cities and Rochester, and since Shianne basically didn’t have a summer, she’d like to take her daughter on a fun weekend getaway, too.

Donations are also accepted at any Bell State Bank location.

Follow Pippi Mayfield on Twitter at @PippiMayfield.