Emmylou Heals with an Unbreakable Spirit

Emmylou's world is a swirl of pink and purple sparkles, princesses and smiles. "No matter what comes her way, she is a positive, sweet kid," her mom, Imelda, says.

When Emmylou was born, a pop echoed, thought to be air pockets in her back. X-rays revealed that most of her ribs were broken, along with her right arm.

Emmylou was transferred to the Neonatal Intensive Care Unit at Children's National Hospital. Her care team helped her parents safely hold their daughter on a foam pillow and guided them through what to expect.

Through genetic testing, they learned that Emmylou has two skeletal conditions that cause fragility. They almost never occur together in the same patient.

At one week, Emmylou's femur snapped. Weekly orthopaedic visits and pain management helped her heal and keep moving forward. To grow stronger, Emmylou bravely gets infusions — or "bone juice," as she calls them — knowing a pizza party will follow. Child Life specialists offer patience and encouragement throughout the process. "They know when to step in and recognize when mom needs a break," Imelda says.

As a toddler, Emmylou broke other bones, including her collarbone and a vertebra in her back, causing severe pain. Her care team modified her treatment plan with adjustments to her medications and infusions, and they continue to put her evolving needs first as she develops. With experts in her corner, she can get back to being a kid.

"Taking Emmylou to the zoo, seeing holiday lights together or doing anything that a regular child gets to enjoy makes me emotional," Imelda says. "It's what we've been fighting for."