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For Kids LikeEvie

Evie Elsaesser is a born fighter. "When we were pregnant, doctors at Children's Hospital & Medical Center in Omaha thought if she survived, she'd make it maybe a few hours," said Lindsey Elsaesser, Evie's mother. An ultrasound at 12 weeks had given the baby an initial diagnosis of a lethal form of brittle bone disease. They continued the pregnancy realizing their baby girl was likely to die soon after childbirth. Born on Sept. 19, 2009, Evie gave her parents an hour, then two, then three. The next day, they found out that Evie's heart and lungs appeared to be okay, and she could go home. "We didn?t even bring a car seat," Lindsey recalls. Dr. Richard Lutz, a pediatric endocrinologist at Children's, was able to diagnose Evie with hypophosphatasia (HPP) and connected the Elsaessers to a clinical trial for an experimental HPP drug, Strensiq. "Without that drug, her bones could have disintegrated," said Lindsey. Evie is now 8 years old and loves to swim. Thanks to her team of doctors, nurses and caregivers at Children's, and the support of individuals like you, Evie is able to participate in swim meets, and continue to win, in and out of the water.