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12-year-old Idaho girl stays positive, despite battle with rare birth defect

"Watching her go through it has been inspiring because she is so positive about it and has the greatest sense of humor," Emmalynn's mom Melissa said.

BOISE, Idaho — Like many girls her age, Emmalynn Rupe loves spending time with her family and friends. Unlike many girls her age, however, Emmalynn was born with a very rare birth defect.

"Less than 1% of the population has it; you have a 0.9% chance of getting it, and it makes up something like 3% or less of all pediatric cardiology, heart defects," Emmalynn's mom Melissa said. "It is very rare."

On Dec. 1, Emmalynn and her mom are preparing to fly to California, so Emmalynn can undergo open heart surgery at Stanford.

"Emmalyn on August 16, was diagnosed with a right coronary artery disorder, where her right coronary artery which gives the heart itself blood is supposed to originate on the right side," Melissa said. "And instead, her's rotates on the left. It then travels under in between her aorta and pulmonary trunk and then ends up where it needs to be. So when Emma does activity, for the last six years, she has been having chest pain."

Melissa said it was later when they found out the chest pain was actually miniature heart attacks, because Emma's heart does not get enough blood. That pain has kept Emma from doing the thing she loves the most: dancing. 

However, Melissa said the disease has not affected her daughter's witty and quirky personality.

"Watching her go through it has been inspiring because she is so positive about it and has the greatest sense of humor," said Melissa, "but as a mom, knowing that she's got a full bypass ahead of her and they have to stop her heart, is terrifying."

The family has started a GoFundMe to raise money for Emma's surgery, in case they are not able to get into the Ronald McDonald House program, which helps to reduce the stress and financial burden families often go through when getting medical care for their child.

But Melissa said they won't know if they are accepted into the program until 48 hours before the surgery is scheduled. However, the family has continued to stay positive and is confident that this is just another hurdle on Emma's path to healing.

"One day, you'll see Emma on Broadway, you're gonna see her again," Melissa said. "So this is not going to be the last time you hear her story. This is just her little pause, then she's going to have an amazing act. So I cannot wait to watch her after she doesn't have any of these limitations and see how much she grows."

The family heads to California on Nov. 27. Emma could be in the hospital for five to ten days, but the family is preparing to stay longer depending on what happens.

Melissa stressed the importance of parents listening to their kids when they tell you things hurt. Many times people can have diseases that they are unaware of until something bad happens.

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