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Published May 01, 2014, 09:41 PM

11-year-old Hawley girl at high risk for sudden death due to a heart condition

Hawley, MN (WDAY TV) - Most 11-year-olds biggest worry might be fitting in at middle school. But a Hawley girl has a lot more on her mind - one day, she will need a new heart. Last summer, Shianne Stull was diagnosed with Hypertrophic Cardiomyopathy.

By: Becky Parker, WDAY

Hawley, MN (WDAY TV) - Most 11-year-olds biggest worry might be fitting in at middle school.

But a Hawley girl has a lot more on her mind - one day, she will need a new heart.

Last summer, Shianne Stull was diagnosed with Hypertrophic Cardiomyopathy.

It makes it difficult for her heart to pump enough blood.

Right now, her family is taking it day-by-day, but the risk of a sudden fatal episode is hanging over their heads.

Shianne Stull is just like any other 11-year-old.

She likes crafting, reading, swimming and listening to music.

But she has had more than her share of hardship.

Michael Thompson/Shianne’e Step-Dad: "It's been a roller coaster.”

Last July, Shianne was having frequent episodes, collapsing, passing out.

She was rushed to hospital, where she spent five days hooked up to machines, undergoing test after test.

Lisa Johnson/Shianne’s Mother: "At first, they said it was a seizure disorder. But my mom instinct went off."

A week later, a pediatric cardiologist in Minneapolis diagnosed Shianne with Hypertrophic Cardiomyopaty, or HCM.

The only known cure is a heart transplant.

Shianne is considered high-risk for sudden death.

But even that isn't enough to get her on the transplant list - reserved only for those with severe heart failure.

Step-Dad: "It's hard to know that someone you love could die at any time."

Right now, Shianne is doing well.

She has an implanted defibrillator that constantly monitors her heart rate.

Because of that, she can't participate in sports or other activities like snowmobiling.

Mom: "That's hard on her, that she can't do what her friends are doing."

Right now, they are just taking it day-by-day; trying to live life to its fullest the best they can.

Step-Dad: "It's just hard to see someone that young have to go through this."

This Saturday, the family is having a benefit at the Mainline bar and grill in Downer.

It starts at one, and will feature games, a silent auction, dinner, and live entertainment.

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