My daughter’s health was a mystery. The answer was on the other side of the world

I connected with other moms worldwide, doctors and a geneticist – and identified the rare genetic disorder that connects us allRight after my daughter, Maggie, was born in 2012, she held her hands clasped together against her chest. “Like she’s praying!” a nurse said in a singsong voice. But when the pediatrician walked in, the mood changed. “Praying?” she asked, her voice tight. The nurse and I stepped back while the pediatrician gently moved Maggie’s limbs, testing how much they could straighten or bend. While some tightness in the hips or knees can be normal for a newborn, Maggie’s joints were unusually tight and her limbs could not straighten all the way.The pediatrician pointed out the rounded soles of Maggie’s feet. “A handful of genetic conditions can cause the shape of her feet. Most of them are fatal,” she said. Continue reading...

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