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By LuAnn Schindler
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Kurpgeweit family 'learning as we go' after son's diagnosis with rare brain condition

Lissencephaly affects 1 in 100,000 children

 

January 25, 2024

Courtesy photo | Alyx Kurpgeweit

Sibling bond • Five-year-old Wesley Kurpgeweit snuggles with her brother, Rhett. The 16-month-old son of Matt and Alyx Kurpgeweit was diagnosed with lissencephaly, a rare genetic disorder.

As a licensed practical nurse, Alyx Kurpgeweit recognizes when a patient is in distress.

As a mother, Kurpgeweit realized her son, Rhett, who was six months old at the time, was struggling.

"He wasn't sitting up yet and wasn't meeting normal milestones," she said.

A discussion with the family's pediatrician led Alyx, husband Matt and Rhett to Boys Town National Research Hospital, in Omaha, where Rhett was diagnosed with lissencephaly, more commonly known as Smooth Brain Syndrome.

Ironically, lissencphaly is not all that common.

"It a rare genetic condition that affects one in 100,000 babies...



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