Izzy's Story

Izzy lives in California and loves to put on make-up and listen to the latest pop music. “She is my Walmart greeter to the world,” says her mother, Alexis. “She’s the mayor of wherever she goes.”

 

Izzy has neurofibromatosis (NF), which impacts one of every 3,000 children in the U.S. and leads to unpredictable nerve tumor growth. Near her first birthday, she was diagnosed with the condition. Doctors removed a large tumor behind her left eye, but it soon regenerated and led to facial deformity.

 

When Izzy was 3, her family came to the Gilbert Family Neurofibromatosis Institute at Children’s National Hospital where she met Dr. AeRang Kim. Dr. Kim had just launched a multi-site National Institutes of Health-backed study of MEK inhibitors. This new therapy shows great promise for treating and preventing NF tumors.

 

Izzy’s tumor size decreased rapidly and shrunk by 40 percent. Six years later, the therapy continues to help control her condition. “It’s a huge blessing every day,” says Alexis. “She’s a really normal, average 10-year-old. To have that normalcy is a great gift to us.”