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MN parents plan 'celebration of a miracle' for son with rare disease

It's an extremely rare condition, with symptoms often overlooked or unnoticed by parents. Luckily for the Murchie family, a small clue helped save their son's life - and now, they're hoping to celebrate.

NEW BRIGHTON, Minn. - Emileo Murchie is just a few months old, but he's already a fighter.

In fact, he's earned the nickname "Leo the Lion."

But Leo's fight is one his parents, Lukas and Kristi, never expected their family would face. When he was born in June 2018, Leo was a perfectly healthy baby.

"It was totally great and normal," Lukas Murchie explained.

About a month later, however, they noticed something odd: one morning, Leo was breathing faster. The Murchie parents called a nurse's line and she urged them to call 911.

"I thought it would be something easy to overlook because there were no other symptoms," Lukas said.

In the ambulance, Leo's heart started to shut down. He was rushed to Children's Minnesota in Minneapolis, where doctors found a weakness in his heart muscle and high blood pressure - two things that don't usually go together.

"We feel incredibly lucky that we called when we did," Lukas said.

Instead of recommending a heart transplant, the doctor's got the hospital's genetics team involved. Special DNA genome sequencing found something very rare.

"In my career of 30 years, I've seen it one other time," said Dr. Nancy Mendelsohn, the chief of specialty pediatrics.

Leo was diagnosed with Generalized Arterial Calcification of Infancy, a disorder which affects how the body processes calcium.

"It’s really rare, disorder, disease that he has," Lukas explained. "So there are less than 200 cases in medical literature about it and there is no standard of care."

Babies with the disease are given a prognosis of less than six months to live, but most babies also aren't diagnosed until after they've died.

"It's very unusual for us to be able to diagnose this in a child, treat them and have them improve and that's what's so exciting about Emileo," said Dr. Mendelsohn.

Now, Leo is taking medication. He has a long road ahead but doctors say, thanks to treatment, his chances are good.

So when (not if) Leo turns one, his family is planning an epic celebration - a celebration of a miracle, they're calling it.

The Murchie family is hoping to draw the attention of both Ellen DeGeneres and Bruno Mars to come to the party - and to get the word out about the disorder. But why those two?

Ellen, because of her big heart and sense of humor, and Bruno Mars because of his passion for life, Lukas said.

"Bruno Mars came to my mind, because if you’ve ever seen him perform on stage, he’s doing what he was built to do," said Lukas. "That was what he was made for. He’s not taking his life for granted, and that’s the lesson that I’ve learned this summer. Spending that month in the hospital was like - it is amazing that any of us are here."

To learn more about the Murchies and Leo's fight, visit his CaringBridge site here.

You can also donate to Leo's GoFundMe here.