January 25th, 2023
January 25th, 2023 — three years ago, something happened to my 9-week-old baby girl.
I almost lost her in my arms.
Paigey—my sweet little girl, who somehow already had sass even as a newborn—was rushed into a Level 1 trauma room at Texas Children’s ER. I didn’t even know this hospital existed. I barely knew what intubation was. I was terrified of IVs and medications being put into my tiny baby who had only had breastmilk in her little tummy for nine weeks.
I remember thinking What just happened? Is this a nightmare? I thought if i just blinked she’d be in my arms, just like she was five hours earlier.
The First Three Days
MRIs. Blood tests. Specialist consults. A CT scan. X-rays.
Three days of absolutely nothing.
We had no idea why Paige’s respiratory system had crashed, and she still hadn’t woken up.
Then one day, as they were removing the 72-hour EEG, they caught a “subclinical focal seizure.”
Before that moment, I imagined seizures as the kind where someone spasms, vomits, and you immediately put them on their side. But my girl was sedated. Intubated. Completely still. Her eyes were closed, as if she were in the deepest sleep.
Behind those eyelids, her brain wasn’t working right. Signals were firing in places they shouldn’t have been.
That focal seizure was the first step in realizing something wasn’t quite right in Paige’s brain.
Waiting for the Right Test
Two weeks of sleepless nights.
Five days in the ICU.
One day in the pediatric unit, then rushed back to the ICU.
Moments where I was absolutely powerless—frightened, and more emotionally and physically fatigued than I had ever been.
It took two life-threatening events for genetics to rush the Whole Genome Sequencing test. Then, during week three, we got a call asking if they could meet with us as soon as possible.
Our thoughts were racing. John had been researching everything, and one condition that fit Paige’s symptoms carried a life expectancy of less than five years. The doctors had mentioned it too.
What were we about to hear?
Were we going to be told our daughter would die?
Or was this something we could manage?
At that point, all I wanted was any answer. Even a scary answer was better than not knowing.
ATP1A3
A kind man—someone who clearly loved genetics—started the meeting by saying, “We’ve never had a case of this before at Texas Children’s. They call it one in a million.”
One in a million.
My sweet baby girl had a genetic condition that only one child in a million has been diagnosed with.
“A disorder of the ATP1A3 gene,” he said, showing us how one letter had been misplaced. “It could be one of seven disorders, or it could be none of them. But we believe it’s this one: Alternating Hemiplegia of Childhood.”
A Disorder with Many Differences
Questions ran through my head. I also felt affirmed as a mother—I remembered a time Paige hadn’t moved one side of her body.
But why does she stop breathing?
What about the seizures?
Will she walk?
Will she live a long life?
“We don’t know much,” he said honestly. “Some children die before ten. Some walk at five. Some never walk. Delays are common, as are difficult-to-manage seizures. We also haven’t found a case involving respiratory issues, so that part appears unique to Paige.”
I couldn’t stop thinking: Will I be able to care for her? How do I keep her safe? Am I going to fail her somehow?
Triggers
Then he explained triggers.
Some children have neurological events during baths.
Some become paralyzed when they’re excited or happy.
My mind panicked. Wait—so I can’t give her a bath?
I can’t tickle her? I can’t make her happy?
I replayed every interaction in my head. Could a laugh, a hug, a smile, a simple game hurt her? Could holding her, loving her, even touching her, be dangerous?
It was overwhelming, confusing, and terrifying all at once.
I kept thinking: How do I protect her and still let her live? How do I let her be a baby?
Processing
The genetics team eventually left the room, giving us space, resources, and time. They told us about the AHC Foundation and pointed us toward support groups.
We didn’t reach out right away. We needed to sit with it first.
In the days after the diagnosis, we felt a mix of relief and uncertainty. Paige could potentially go home. She could live a life. We even joked that being homebodies might help, since it sounded like Paige might not be able to go many places.
We also had harder conversations. Worship is non-negotiable for our family. Meeting with God’s people is our life. What did that look like now?
I remember thinking: Our lives are changed forever, but maybe we can still have a life too. Maybe we can adapt and find a new normal.
One Gene, So Small
Still—we had an answer.
A gene in Paige’s body was misspelled.
Her brain processes electricity differently.
She has Alternating Hemiplegia of Childhood.
January 18th is International AHC Day—the day researchers connected ATP1A3 gene disorders to these symptoms, finally giving families an answer. Not an easy one, but an answer that helps you understand what’s broken and what isn’t your fault.
Even though it was scary, knowing gave me a sense of control. We had a name. A direction. A way forward.
One in a Million
Rare diseases like Paige’s aren’t talked about the way more common diagnoses are. That makes them harder to explain, harder for hospitals to teach, and harder for families to navigate.
Yet God answers prayers in His time.
On January 25th, 2023, we begged Him to save our baby—and He did. He saved our precious girl and showed us what was different in her body. Maybe one day, through His work in our lives, we can help someone else.
Don’t shy away from rare diseases.
There are one in a million children out there.
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Beautiful picture of you family.