Helping Dottie Grow Up Gracefully

Three-year-old Dottie is an old soul. That’s how her mom, Angie, and her medical team at Children’s National Hospital describe her.

 

“She waltzes right out of her appointments,” Angie says, in awe of her daughter’s poise and bravery.

 

Dottie was born with PIK3CA-related overgrowth, known as CLOVES syndrome. She had a webbed hand and enlarged foot. Doctors referred Angie to the genetics team at Children’s National where the expertise of Kim Keppler-Noreuil, M.D. put her at ease.  

 

“When you get a diagnosis for a rare genetic disorder, it's a huge comfort to the parents when you have the expert on that disorder -- in our case, literally the person who wrote the book on it,” Angie says.

 

As anticipated, continued growth in Dottie’s hand and foot meant she would need a series of surgeries, along with drug therapies. Angie is grateful to the Children’s National team for making what can be a difficult and scary experience much lighter for Dottie.

 

“She has every princess sticker known to man whenever she leaves the hospital,” Angie says.

 

With so many people cheering her on, Dottie lets nothing hold her back. She excels at gymnastics and brings joy to her whole family with her charisma and sitcom-ready catch phrases, such as “What in the world!”

 

A key goal for Dottie’s quality of life is to make sure she can wear shoes, something additional surgeries and lifestyle changes would support. Angie learned to manipulate Crocs shoes when they’re warm to form the right shape for her daughter’s foot. Just when Dottie grows out of her custom shoes, Angie’s spirits start to deflate. But she finds renewed hope from her support network, including the Children’s National team -- even from remembering their first visit.

 

“You’re going to this big city D.C. hospital with a newborn in your backseat, and from the second you pull in, you have a parking attendant guide you to a spot,” Angie says. “And from that moment, I knew I'm not alone in it.”