Michelle’s face was large and innocent. She had a nose like a little beak, and she was balding. It was discovered that she had Hallermann-Streiff syndrome, a hereditary illness of which there are only 250 known cases worldwide.
Michelle was born at Children’s Memorial Hospital, where no one had ever seen it in person.
When the doctor told us we had Hallermann-Streiff syndrome, my heart fell. “I was concerned about how we were going to care for our child who had a rare genetic disease that was one in five million,” Michelle’s mother said.
Michelle exhibits 26 of the 28 symptoms that are associated with the condition. Although the sickness affects only one in five million people, it can lead to a variety of health issues.
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