Finding Unexpected Hope Through My Daughter’s NF1 Journey

My lifelong dream was to become a mother. So, I was not about to give up when we faced challenges. After multiple rounds of IVF, I was pregnant with our miracle baby. Our bold girl, Everly, dramatically entered the world four weeks early.

At two months old, Everly did not hit her gross motor milestones. Worried, we began a journey of unanswered questions. Nine months later, she was finally diagnosed with neurofibromatosis type 1 (NF1), a rare genetic condition that causes tumors to grow throughout the body on nerves. As a result, she also has an optic pathway glioma, which is a tumor on the nerve that helps her see.

Our world shifted forever.

On the day of her diagnosis, she was full of life, curiosity, and had the most contagious laugh. While she remained blissfully unaware, I remember tears streaming down my face, terrified of the uncertainty of her future and severity of this disorder since there is currently no cure for neurofibromatosis.

Image: Everly at the hospital.

Since then, her diagnosis has brought countless doctor visits, scans, and procedures. This two-year-old has a full schedule. We have a Skylight calendar, and it’s literally called Everly’s Chaos. This week alone aside from chemo she had on Monday, she had neurology on Tuesday, neuro-ophthalmology and OT on Wednesday, speech on Thursday, and an ENT visit on Friday.

MRI days are especially overwhelming for Everly. She has medical trauma. She takes sedatives on chemo days, and she still cries. When we go to the doctor, Everly sits behind me in a ball. It’s actually so sad.

I started looking for pediatric support resources to help, and I found Starlight's character-themed Hospital Gowns. I requested one for Everly. At the time, I was just hoping for something small that might make those days a little easier.

We received a Princess-themed Starlight Hospital Gown through one of the Starlight Children’s Foundation programs. Everly wore it for an emergency MRI, and it was like we were playing dress up. We said, ‘You look like a princess.’ It was a good distraction from the doctors in the room.

She had so much fun in the hospital that when she came home, she wanted to dress up like a princess – something I had always imagined for my daughter. In the middle of something so heavy, she got to just be a little girl again – and that meant everything.

It gave me hope. Hope that things won’t be as bad as I think.

What started as something small – a Starlight hospital gown – became so much more than we ever expected.

As a parent, watching your child face so much is heartbreaking, but Everly’s strength, anchored by community support, shows me what true resilience looks like.

Image: Everly dressing up in a princess costume at home.

Despite everything, Everly is thriving in her own bold, beautiful way. She’s now two years old and just as determined as ever — fiercely independent, endlessly curious, and never without her signature sass. Between her early intervention services, physical and occupational therapy, speech, and CVI sessions, she works hard every week to meet milestones that most children reach effortlessly.

And yet, she does it with a smile — usually after refusing all demands first, just to prove she’s in charge. Eventually, she’ll give in, flash her mischievous grin, and maybe even let the clinician earn a high-five.

It’s her world; we’re all just lucky to live in it.