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July 23, 2014

Waconia grandparents adopt boy from Haiti with rare disorder

KARE 11 has the story of 50-something Waconia couple Brian and Lori Stangret, who have adopted a 2-year-old named Ami from Haiti with a rare genetic disorder called Crouzon Syndrome.

“For a 50-year-old in retirement, it’s a different life,” Lori Stangret told KARE. “But, you wouldn’t believe this kid. He is the highlight of our town.”

The disorder affects the way skull bones fuse in the womb and affects the shape of the face and often affects breathing and speech, KARE 11 reports. It also likely affected the way he was treated in Haiti.

“Before we got there, they said nobody ever took care of him. He just sat all day in dirty diapers, because of the way he looked,” Lori Stangret said.

So the couple set out to adopt the boy. Their 25-year-old daughter, Ayla, moved to the Haitian orphanage for nine months to volunteer and help care for Ami while the adoption proceeded.

A team of Minnesota doctors is now coordinating the boy’s care. He recently had a surgery at Amplatz Children’s Hospital to reduce pressure on his brain, and he’ll undergo a number of future surgeries designed to improve his facial structure and airways, KARE reported. Here’s the story: