Parents of Minnesota baby born with rare disorder share story, feelings of hope

Esther Kuper from Moorhead was born a fighter.

When her parents were 24 weeks into their pregnancy, they learned she had a condition called thanatophoric dysplasia, a rare and often fatal form of dwarfism. Many infants with the condition die before they’re born or shortly after birth.

“Her bones are very short and that affects not just her limbs but her chest wall and her spine as well,” said Dr. Tara Zamora, the medical director of neonatology at Children’s Minnesota.

Esther spent 11 months at Children’s Minnesota, where doctors performed decompression surgery on her spine. Today, she is home with her mom and dad and their two dogs. Her parents say they are sharing her story to give other families hope.

“Her life has meaning, value and purpose not based on what she looks like or doesn’t look like. We want to honor her life,” her dad, Grant Kuper, said.

“One of the reasons we want to share her story is to raise awareness about the value of life and being made in the image of God,” her mom, Brittany Kuper, added.

Esther does speech therapy, occupational therapy and physical therapy on a daily basis in Moorhead.