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Identical Infant Twins Struggle With Rare Heart Defect

MINNEAPOLIS (WCCO) – Although they are just 17-months-old, identical twins Ethan and Evan Moritz have defied the odds.

The twins were born with a rare heart defect called Long QT Syndrome. The boys make up two of the 20 known cases in the world; and most children with the disease don't live past age 1.

Long QT Syndrome causes the heart to have episodes in which it beats out of control -- sometimes more than 240 beats per minute. Each episode is life-threatening, and for the boys' parents, every day is a blessing.

Rebecca Robinson, the twins' mother, said that doctors won't give her children an expected lifespan. The defect is so rare that they can't accurately say.

When Robinson was 26 weeks pregnant, doctors discovered a problem in both boys' hearts. Born prematurely, the twins were rushed from Abbot Northwestern, where they were delivered, to the University of Minnesota Children's Hospital for emergency surgery.

Dan Moritz, the twins' father, said the experience was the hardest thing he'd ever gone through.

Over the course of the twins' first year, they were hospitalized more than seven times. Ethan Moritz has had seven surgeries and Evan Moritz has had six.

For Robinson, days and nights are filled with making sure the twins are taking medications every couple hours. She gets help from a nurse, and monitors send reports directly to the Mayo Clinic. But for the family, it's physically and emotionally trying. They live with not knowing what tomorrow holds.

"I'm not that much of an emotional person," Robinson said. "But when it comes to this, it really breaks me down. It's hard to see your children and wonder, 'Are they going to make it to the next day?'"

Still, Robinson said she wouldn't trade her boys for anything.

If you would like help the Moritz family, there will be a benefit for the twins Jan. 21 at Elk Lodge 44 in Brooklyn Park, Minn.

Donations for the Ethan and Evan fund can be made at any Wells Fargo bank.

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