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Racing for Lily

150 Stories Lily

Lily was born healthy with big blue eyes and chubby cheeks. She was also born with coronal craniosynostosis, a serious genetic disorder. Two plates in her skull had fused together early.

Lily had surgery at Children’s National Hospital at 6 months to correct the condition. “On surgery day, I wanted to take my baby and escape,” her mother Heather recalls. “But Drs. Oluigbo and Rogers were kind and compassionate. They told us how strong Lily was and checked in with us often. We felt supported by them and every staff member during an emotionally trying time.”

Lily was in the hospital for a week. Heather noticed preparations underway for the hospital’s first-ever Race for Every Child. “We have always been runners,” she recalls. “We vowed that when it was time for the next Race for Every Child, we wouldn't be sitting in the hospital.”

Lily needed surgery again when she was 18 months old to help her eye muscles adjust to changes from the first surgery. Now 6, Lily loves to dance, swim, cook and read. “She's a happy girl with a kind heart and can chat your ear off in the best possible way,” says Heather.

Heather has led a large race team every year since 2014 to celebrate Lily and other children like her. “Nobody wants to be told your child needs care or treatment,” Heather says. “But if you are, you want the best care possible and that’s what you get at Children’s National.”

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Share your birthday with a child. Celebrate your life, and give a chance to someone who desperately wants to have as many as you. Make it happen