Meet Alana K: 2021 Family Advocacy Week Champion

Alana is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Alana and her family will discuss her health journey, Gillette Children’s Specialty Healthcare’s role in providing Alana with necessary health care services, and why the public and our elected officials must invest in the future of patients like Alana.

When Alana was 3 years old, her parents noticed that her physical abilities were different from her peers and sought medical advice.

Doctors at Gillette Children’s diagnosed Alana with Charcot-Marie-Tooth disease type 4A, a rare medical condition that weakens the nerves in the body. It is a progressive disability that starts in the toes and fingers and works toward the center of the body.

“Since her diagnosis, ongoing appointments, multiple surgeries and weekly therapy appointments have become part of our family routine,” says Robin, Alana’s mother.

“Alana receives wonderful care from multiple providers, especially the team at Gillette Children’s Specialty Healthcare,” says Robin. “We are hopeful that gene therapy treatment will be available soon to halt the progression of her disease.”

Today Alana is 13 years old and enjoys cooking, swimming and bike rides.