When Autumn first came to The Children’s Inn at NIH, she was a young child whose family was navigating the uncertainties that came with her diagnosis of neurofibromatosis type 1 (NF1). As they did, Autumn, who has been profiled by The Inn before, maintained her joy for life and her passion for creativity, supported by family and her community in Lawrence, Kansas. Now 16 years old and a rising high school junior, she is focused on the things that make her feel most like herself — school, music, and time with friends.

For Autumn, the music program at Lawrence Free State High School has afforded her a sense of belonging and an opportunity to be part of something bigger than just herself. She joined the marching band and the choir, playing clarinet and singing. When school regulations required her to pick one or the other as a sophomore, she stuck with the choir. Singing has become one of her favorite ways to express herself and connect with others.

“Most of the concerts we have are choral concerts with regular choir music,” Autumn said. “But our last concert was a pop show, with songs that were more fun and upbeat.”

L-R: Riley and Autumn

Outside of school, Autumn’s love of music continues, especially when it comes to artists like Billie Eilish. Her music is often on repeat, and it’s something Autumn shares with friends, whether they’re listening together or talking about their favorite songs. Her fandom for the hit singer, she explained, cannot be overstated.

“I like Billie Eilish as in…she’s everywhere,” Autumn said with a laugh. “My phone, my computer, blankets, clothes, jewelry, everywhere.”

Although ticket prices and the need for a chaperone have kept her from seeing Eilish live – yet – live music is undoubtedly a meaningful part of her life. Her sister, Riley, took Autumn to see Eilish’s concert movie, Hit Me Hard and Soft – The Tour Live in 3D to celebrate Autumn’s birthday. As she grows up and has begun attending concerts with her family, live music gives her something to look forward to and a chance to fully immerse herself in an experience she loves, letting her simply be a teenager, surrounded by energy and excitement.

Autumn continues to receive care through the NIH, where she is seen by Dr. Brigitte Widemann and nurse practitioner Anne Dufek. Over time, those visits have become something she genuinely looks forward to.

“She loves both doctors,” her mother Lindsay shared, reflecting the trust and connection that has grown over the years.

Staying at The Children’s Inn at NIH remains an important part of her experience. The Inn provides a place where families can step away from the stress of appointments and treatments and focus on simply being together. For Autumn, it’s also a place where she can connect with other teens who understand what it’s like to live with a serious medical condition.

L-R: Dr. Andrea Gross, Dr. Brigitte Widemann, Autumn, NP Anne Dufek

Autumn also took part in Camp Fantastic for the first time this summer, a summer camp designed for children with cancer or NF1 and a protocol within the National Cancer Institute. The camp, which provides a community of support to these children in a summer camp setting, takes place in Front Royal, Virginia. Autumn spent a week at the camp, and enjoyed it so much that she is considering being a junior camp counselor next year.

As she’s grown older, Autumn has developed a strong sense of confidence in who she is. She also recognizes the scope of NF1, and the efforts being undertaken not just at NIH but in her local community to combat it. May, which served as Neurofibromatosis Awareness Month, saw several local businesses in Lawrence shine a light on Autumn. Landmark National Bank, the Lied Center of Kansas, and Bowersock Mills and Power Company all brought attention to her story, particularly on May 17, NF Day, which Autumn helped commemorate in a ceremony at Lawrence’s City Hall.

For the most part, though, Autumn fills her days with the things she loves — singing, listening to music, and spending time with the people who matter most. Whether she’s performing with her choir or enjoying a favorite artist, those moments reflect the joy and resilience that continue to shape her story.