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'We weren't sure she would live for hours': Moorhead toddler born with rare genetic condition now home

Toddler Esther Kuper was in the hospital PICU at Children's Hospital in the Twin Cities for nearly a year after she was born. When she returned to Moorhead, there was reason for celebration, but it also took a lot of planning.

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Brittany and Grant Kuper of Moorhead read to their daughter, Esther.
Kevin Wallevand / WDAY News
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MOORHEAD — A fighter since day one, Esther Kuper is one of just a handful in the world with a condition called thanatophoric dysplasia, a severe skeletal disorder. Esther is also the daily bright spot for her parents.

"I don't know if it's your favorite, but I like reading it to you," Esther's dad, Grant Kuper, says as he starts to read a book to her.

Like in most homes with a toddler, reading time is quality time.

"Who's up there? Can you smile? Can you smile? Thank you," Esther's mom Brittany Kuper says.

For Brittany and Grant Kuper, it is yet another way to keep growing that bond with their daughter who has been on an incredible journey since the day she was born in September of 2020.

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"I mean, when we first found out her diagnosis, we didn't even think she would live hours, or days," Brittany said.

Esther's diagnosis of thanatophoric dysplasia is rare. About a dozen kids in the world have it. The biggest issue is a small chest cavity, which for Esther means 24/7 care and a ventilator. Because of a reduction in nursing hours for Esther during the night, Brittany and Grant take turns with Esther's needs while the other sleeps.

"It is very exhausting, and so there are many days (when) I got to the end of the day, I was like, 'I didn't even get to do a single mom thing, like, I didn't get to read her a book, I didn't get to just hang out with her and play with her because I was so busy doing medical things with her," Brittany said.

Esther was in the hospital PICU at Children's Hospital in the Twin Cities for nearly a year after she was born. When she returned to Moorhead, there was reason for celebration, but it also took a lot of planning, as Esther transitioned from the safety net of a hospital to being home with mom and dad.

"She has intrinsic value, because she is made in the image of God, and that gives us purpose and meaning to fight for her life," Brittany said.

The Kupers have a strong faith that they say has helped them with the big life questions.

"It's a joy to be her dad and (...) parenthood looks very different than what we imagined, but it's still just a privilege and an honor to be her dad," Grant said. "The Lord entrusted us with her life, and so we want to steward it well."

For now, there are snuggles with cousins and grandparents and a community of friends who have rallied around the Kupers, all cheerleaders for Esther.

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"Trying to balance that of we want to honor life and pursue life for her, yet we want to honor her if her systems are failing or if she just doesn't have what she needs to move forward, so there's that tension that we are in quite often at times," Grant said.

More information on thanatophoric dysplasia can be found here.

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