Our daughter Emma is turning ten. Her birthday happens to fall on October 9 — which is also PANDAS Awareness Day. I don’t think there’s anything more ironic than that. Because for the past year especially, PANDAS has stolen so much of her childhood and changed our family’s life in ways we never could have imagined.
Before all this, Emma was the kind of kid who lit up every room. She was athletic, fearless, and full of energy. She played hockey and soccer, and she loved swimming. She was competitive, determined, and always ready for the next challenge. We thought her biggest worries at age ten would be what team she’d make, or how fast she could finish a lap in the pool.
Instead, our life now looks like seizures, hospital trips, endless doctors’ appointments, and a child who can’t safely go to school without someone by her side every single moment.
It started small — things we couldn’t explain. Bursts of anxiety, strange regressions, sudden changes in mood. At first, we thought maybe it was stress or just a phase. But then came the episodes that changed everything.
Emma’s body will suddenly go rigid or weak. Her eyes glaze over, and sometimes she collapses completely — unresponsive, like someone flipped a switch and her body just shut down. Other times, she goes into what we call her “fight-or-flight” state — but it’s not what people think. It’s not just running off upset. One second she’s beside us, and the next, she’s gone.
She’ll take off without warning, hiding in terrifying, unpredictable places — closets, behind furniture, outside in the dark, under beds, in locked rooms. We turn our heads for a moment and she vanishes. Our hearts stop every single time. We’ve had to search the house in silence, holding our breath, hoping she’s safe and hasn’t hurt herself or escaped outside. It’s every parent’s worst nightmare, and for us, it happens again and again.
When she finally comes out of it, she has no memory of where she went or what she did. She’s exhausted, disoriented, and often scared. And we’re left shaken, knowing it could happen again at any moment.
The first few times this happened, we rushed her to the hospital, terrified something was seriously wrong. We expected the same urgency from the doctors that we felt — but instead, we were met with disbelief. “It’s behavioural,” they said. “She’s fine.”
But she isn’t fine. We know our child. We see her body betray her in ways no one should have to experience.
These episodes have become the hardest part of Emma’s life — and ours. We’ve had to change how we live just to keep her safe. Someone always has to be within reach. We’ve added locks, alarms, and safety plans. It’s like living on high alert 24/7, never able to truly relax, even for a minute.
Emma’s world has become smaller. She’s missed hockey practices, soccer games, swimming lessons, playdates, and school events. She wants to go, she wants to be “normal,” but her body doesn’t always let her. It breaks my heart every time I see her sitting on the sidelines, watching other kids do the things she loves.
We’ve spent months chasing answers — bloodwork, imaging, genetics, specialists. Each time, we hope this will be the appointment that changes everything, only to leave with more questions. We’ve paid out-of-pocket for therapies because the system moves too slowly. And through it all, we’ve been told, over and over again, that it’s “just behavioural.”
No one sees the toll this takes when we get home. The exhaustion. The fear of what tomorrow will bring. The constant feeling of walking on eggshells, waiting for the next episode.
But even in her hardest moments, Emma finds ways to shine. She still folds origami cranes with me — each one a symbol of hope. She still laughs with her sister. She still finds strength even when her body and brain are at war.
This isn’t the childhood she deserves. And it isn’t the life we pictured for our family. But it’s the one we live now. Every day is a mix of fear, resilience, love, and survival.
I share Emma’s story because behind every diagnosis is a real child and a real family. PANDAS doesn’t just take away a few weeks of normal life — it steals childhoods, it isolates families, and it forces parents like us to become experts, advocates, and caregivers all at once.
Emma is turning ten, and instead of wishing for dolls or bikes, we’re wishing for something simple — for her to get her childhood back.
Gabriella True
