Play That Restores Hope: Everly’s Rare Disease Story
“Everly is spunky, hilarious, and wildly determined. Everly's happy (as long as her Mama is in view), social and full of life. Her favorite word to say is ‘no,’ and — like any true toddler — her least favorite word to hear is also, ‘no.’ You’d never know by looking at her all that she’s already faced — and continues to face.”
- Michelle, Everly's Mom
When Everly was two months old, Michelle began feeling something wasn’t right. Little things started to stand out, such as not reaching typical age milestones.
What followed was months of questions and no clear answers. Appointment after appointment came and went, but no one could figure out what was happening to her little girl. Still, Michelle kept going.
“I knew something wasn’t right,” Michelle says. “I trusted my gut — like moms do.”
A Rare Diagnosis and a Tough Journey Ahead
Nine months later, Everly finally had a diagnosis: Neurofibromatosis Type 1, or NF1, a rare genetic condition that causes tumors to grow along the nerves. There is no cure.
In October 2025, everything changed again. What was supposed to be a routine MRI brought devastating news: Everly had an aggressive, fast-growing tumor on her optic nerve.
At just two years old, Everly began chemotherapy. The experience has been overwhelming. Even with sedatives on treatment days, she still cries.
“When we go to the regular doctor, she sits behind me in a ball. It’s actually so sad.”
- Michelle, Everly's Mom
Play, A Pathway to Comfort and Hope
Over time, support from the community helped make Everly’s hospital experience better. Through Starlight programs, Everly received a character-themed hospital gown that helped redirect her attention from fear to fun and play.
“It was definitely a good distraction for her from the doctors in the room because she screams every time doctors enter the room.” - Michelle
When Everly went home, the play didn’t stop. The next day she reached for a princess dress costume she got for Christmas.
Everly had never wanted to try dress-up clothes before no matter how much Michelle tried. But that day, she put on the costume all by herself. For Michelle, that moment meant everything.
“It gives me more hope that it won’t be as bad as I think it is in my head.”
- Michelle, Everly's Mom
Living with a serious illness is incredibly hard. And still, Everly and Michelle face each day and each challenge with courage, love and resilience.
This Rare Disease month, you can support children with rare diseases like Everly by bringing moments of fun and play.
Your support gives kids happiness and parents hope when they need it most.
