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Family gives back to Children's Minnesota after baby dies with rare brain disorder

The Peters provided a sense of comfort to staff and other families in the Pediatric Intensive Care Unit.

MINNEAPOLIS — In this season of giving, John and Kelly Peters are finding ways to heal through their own gratitude, after the loss of their 14-month-old daughter Nora.

"Everyday when you wake up, you miss her," said John. 

The Peters, like many other couples, had dreams of expanding their family after the birth of their first blessing, 6-year-old Emma, but struggled with infertility.

"We knew that adoption was going to be the right choice for our family," said Kelly. 

A choice that would connect them with Nora's birth mother all the way in New Mexico.

"We were actually there for the birth of Nora and I cut the cord, and Nora was placed in our arms. On Dec. 7, 2019 we got to fly back to Sioux Falls, South Dakota with our new baby girl," said Kelly. 

Not realizing four months in, their miracle child would be diagnosed with Lissencephaly, a rare but terminal brain disorder occurring in an estimated 1 in 100,000 births. 

"It's where the folds in our brain didn't develop, therefore, her brain was just completely smooth," said Kelly. "For Nora, she was worst-case scenario and things declined very quickly." 

Nora went on to spend nearly a year in the hospital, while her parents tried coming to terms with how something like this could be.

"She was placed in our arms for a reason," said Kelly. 

Through Nora's diagnoses and passing, the Peters say there was a lesson. 

"What we've learned is we've learned to have a heart of gratitude…and really be grateful and thankful for all the things we do have in our life," said John. 

That includes the doctors and nurses at Children's Minnesota, who the Peters thanked with a holiday meal. They provided a sense of comfort to other families in the Pediatric Intensive Care Unit, who are struggling this holiday season. 

"Because Nora gave us so much love and life we wanted them to know they're not alone," said Kelly. 

All in effort to honor Nora's life, while turning grief into gratitude.