When the Diagnosis Came, It Was Too Late: A Family’s Plea After Losing Their Daughter

Attalie Brooklyn Marie Meza was more than a daughter. She was the light of our family, the spark in our hardest days, and the soul who taught us how to keep going even when everything felt impossible.

“She passed away on August 22nd, 2025. Just three years old.

She died in our arms—at home, surrounded by her siblings—after a brutal and swift decline from a rare genetic mutation. She never got her Make-A-Wish trip. She never got the time she deserved. But she gave us everything.”

Our Journey Wasn't Just Hard. It Was Unimaginable.

Attalie had always needed extra care. But it wasn’t until July that we finally got an answer: a CACNA1B gene mutation, so rare, no one had studied her variant before. By then, her body was shutting down. She had to be hospitalized for an emergency feeding tube. She was in decline before we even got a name for what was happening.

The CACNA1B gene helps control tiny calcium channels in the brain and nervous system. These channels act like messengers, allowing nerve cells to communicate with each other. When the gene is altered by a mutation, those signals can be disrupted, leading to severe problems with movement, development, and vital functions.

“While other families were planning birthday parties, we were meeting with specialists. While others posted first-day-of-school pictures, we were navigating hospice.”

“Her official diagnosis came just 30 days before she died. That’s how cruel this was.”

‘Because she was undiagnosed for so long, we couldn’t qualify for the help we needed. I make “too much” for assistance—but not enough to survive this. I drained my savings to keep Attalie alive. I paid out-of-pocket for medications, treatments, therapies. Her father paused his life for three years to stay home and care for her, while I kept working to hold us together.’

With U.S. health system, most programs—whether through insurance, Medicaid waivers, or nonprofits—require an official diagnosis before families can get support. Without that, even children with obvious medical needs often don’t meet the criteria for therapies, equipment, or nursing care. And for families like Attalie’s, earning “too much” for public assistance but not nearly enough to cover the staggering out-of-pocket costs, the system leaves them in an impossible gap—forced to drain savings and put their lives on hold just to keep their child alive.

“We fought for over two years for answers. And in the end, we got 30 days.”

We Had to Watch Her Die.

“On August 19, Attalie entered hospice care. On August 22, she was gone. Her siblings were home. They saw it happen. That’s a memory they now live with, and one I wouldn’t wish on any parent, ever.”

“Our home wasn’t filled with fear, it was filled with love. But love doesn’t pay medical bills. Love doesn’t cover funeral costs. Love can’t erase the trauma our children are processing or undo the financial devastation of a years-long medical crisis.”

“We were scheduled to take her on a Make-a-Wish trip to Disney World. She never made it.”

She Spoke with Her Eyes. She Taught Us Everything.

Attalie couldn’t speak, but she learned to communicate through sign language and expression. Her eyes were deep and knowing, always looking for the next rainbow, always shining. She loved Hello Kitty, Bluey, and her siblings’ stories. She loved cuddling. She loved life.

And she taught us what it means to fight for every moment.

We Are Asking for Help.

We are trying to raise $15,000 to cover the rest of Attalie’s medical bills and funeral costs. We’ve paid for half. We just need to close the gap.

We’re not asking for luxury. We’re asking for dignity. For a chance to start rebuilding—emotionally, financially, and as a family. Her father needs to return to work after three years away. Our other children need therapy. They need stability. They need to know that after everything we’ve lost, we’re not going to lose our home too.

This isn’t just about grief. This is about survival.

If Attalie touched you—even as a stranger—please help us honor her by making sure we’re not buried under the weight of this loss. Every dollar matters. Every share matters. We are still standing because of kindness.

In Memory of Attalie Brooklyn Marie Meza

January 22, 2022 — August 22, 2025
Our Baby Goats. Our Rainbow Girl. Our Forever Light.

“You held me for awhile, but you are my forever. In every dream, I dream of you and I together. Sweet dreams, little baby.”