By Claudia Rufo—For the North Star Reporter
At 11 months old, Everly Freitas’ life and her family’s changed forever with a diagnosis that shaped their future: neurofibromatosis type 1 (NF1), a rare genetic condition causing tumors along nerves and unpredictably impacting development.
Yet long before the diagnosis, her mother, Michelle Kimball, knew something wasn’t right.
“At month two, I knew something was wrong… and I just kept being dismissed and dismissed by the doctor,” Kimball recalled. “I was like, no… I don’t think she’s autistic. I think there’s something wrong.”
What followed were months of uncertainty, advocacy and frustration. Despite clear developmental delays, Kimball said her concerns were repeatedly minimized. It wasn’t until Everly was about 9 months old that a critical clue emerged: café-au-lait spots, light brown birthmarks linked to NF1. She was born with one, but the spots quickly increased.
“She was only born with one, and at 9 months old, she had 14,” she explained.
From that moment, Kimball said she trusted her motherly instincts. Even before doctors confirmed it, she believed she had the answer.
“At around 9 [months], I was like, oh my god, she has neurofibromatosis,” she said.
The official diagnosis came shortly after an MRI in September 2024. By then, Kimball had already begun processing the reality.
“I didn’t even cry. I knew she had it… I had already cried when I figured it out myself,” she said.
Everly’s story is not just about a diagnosis; it’s about the unseen challenges that come with living with a chronic illness. Kimball described a life filled with appointments, research, and relentless advocacy, shaped by empathy and purpose.
“It’s changed who I am, and I will never be the same… I’ve become her biggest advocate,” she said.
Beyond the medical challenges, there are emotional and social hurdles, especially for young children trying to navigate the world.
“I want families to teach their children to ask questions… I don’t want them to pity Everly. I want them to understand her.”
Moments of inclusion, even small ones, can mean everything. Kimball recalled a recent breakthrough during Everly’s dance class.
“Two boys were playing with her and chasing her,” she said. “They included her, and that was the most amazing thing to me.”
Creating joy in difficult spaces
May is NF1 Awareness Month. Organizations like the Starlight Children’s Foundation play a key role in supporting families like Everly’s, helping to bring comfort and normalcy into hospital environments.
Viktoria de Jong, a senior mission delivery coordinator and Certified Child Life Specialist, works directly with families navigating serious illnesses.
“We have many programs meant to help make the hospital an easier place for kids,” she said.
From hospital gowns designed with playful characters to mobile gaming stations and toy deliveries, Starlight focuses on restoring a sense of childhood in clinical settings. De Jong shared that many statistics show a child’s transition from regular clothes to hospital gowns is the toughest battle.
“So much of what a child knows and loves is taken away from them when they’re in the hospital, so giving them a chance to play brings them back to something that they’re familiar with,” de Jong explained.
These programs address more than boredom; they help counter the emotional toll of illness. Children facing chronic conditions often experience isolation, anxiety, and medical trauma.
One especially meaningful initiative for Everly was receiving a “Brave Barbie,” designed to help children cope with medical changes like hair loss.
“It provides that sense of connection… to really help a child understand what they’re going through and help make them not feel so alone,” de Jong said.
Today, Everly continues to grow, learn, and navigate life with NF1, supported by her family, her medical team, and a growing community of advocates.
For her mother, the mission is clear: awareness, understanding and progress.
“I want to find a cure in her lifetime,” she said.
While the journey is far from easy, it is filled with moments of resilience, connection, and hope. It shows that even in uncertainty, light can be found.
If you or someone you know may be experiencing something similar, consider visiting https://www.starlight.org/. If you believe you may benefit from Starlight’s help, go to http://starlight.org/families.