Before welcoming their baby, parents endure a thrilling nine-month wait. For Mary and Brad Kish from Illinois, this anticipation turned into shock when their daughter Michelle was born in the late 1990s.
Mary’s pregnancy and delivery were smooth, but when Michelle opened her eyes, doctors immediately noticed something was off. After researching and consulting a geneticist, they diagnosed her with Hallermann-Streiff syndrome, a rare genetic disorder with only 250 known cases worldwide.
“No one had ever seen it in person at Children’s Memorial Hospital,” Mary recalled. “When we received the diagnosis, my heart sank. I worried about how we would care for a child with such a rare condition.”
Michelle exhibits 26 of the 28 symptoms associated with the syndrome, including dwarfism, making her noticeably shorter than her sister, despite their close age.