Meet Emily: 2017 Speak Now for Kids Family Advocacy Day

Emily began showing symptoms when she was just 6 months old. But, it wasn’t until she was 6 and started falling in school two or three times a day that Emily’s doctors asked if anyone had ever done an MRI on her. She was diagnosed with chiari malformation, a condition in which brain tissue extends into the spinal canal, present at birth. She was subsequently diagnosed with tethered cord and Elhers Danlos Syndrome.

“We want the best for Emily. We want her to have a normal childhood, but she isn't able to,” said Emily’s mom, Cynthia. “There are restrictions for her like riding horses, jumping on a trampoline. She lives in pain every day. It's hard for other kids to understand because there are no visible signs.”

Now 16 years old, Emily has undergone 13 brain surgeries and seven back surgeries since her diagnosis. Through all of her surgeries and hospital stays she has remained positive. She loves doing crafts that can be done while in bed, as well as making special gifts for all her health care providers who care for her in the hospital.

No matter how sick Emily feels, music has and always will be an outlet for her. This future Broadway star loves to sing, compose and play her instruments. Emily's hero at Seattle Children's Hospital is Dr. Richard Ellenbogen. He listens to her, he cares about what she says and he always believes in her.

Help us welcome Emily to Washington, D.C.!