The quiet worry that accompanies raising a child with ANCA vasculitis

Janessa Kaneaster’s 7-year-old daughter, Kaylee, who has ANCA vasculitis, takes a break for a picnic lunch. (Courtesy of Janessa Kaneaster)

This is Janessa Kaneaster’s story:

When your 7-year-old gets diagnosed with something as rare and complicated as ANCA vasculitis, everything shifts. It’s not loud panic — it’s more like a constant, quiet worry that settles in and never really goes away. We’re two years in now, and it’s still really tough.

For me, I needed to learn a whole new language: labs, meds, symptoms, and warning signs. Suddenly, I was tossing around phrases like “inflammation of the blood vessels” and “relapse.” But even with all the medical stuff, the hardest part isn’t the words. It’s the helplessness. It’s seeing your kid miss out on the carefree kind of childhood they should have — running around, playdates, sleepovers — because they’re dealing with doctor’s appointments, medication side effects, and exhaustion.

The worst part? Just watching her go through it. Seeing her feel awful from meds, sitting out while other kids are out there just being kids. You’d do anything to switch places. But you can’t.

Sometimes things are OK for a while and we almost start to breathe again. Then something small happens — a rash, a cough, a random pain — and suddenly the alarms go off. My mind jumps to worst-case scenarios before I even realize it. I try to stay calm, but in reality, I panic.

People don’t always understand, and that’s not their fault. I wouldn’t have, either, before all of this. But it can feel isolating. It’s hard to explain a disease hardly anyone’s heard of — and even harder to explain the constant fear that comes with it.

But my daughter? She’s a little warrior. She still laughs, makes plans, and lives her life. She’s shown me what real resilience looks like, more than I ever thought I’d need to learn. I am in awe of her.

I worry. A lot. But I keep showing up, just like she does. One day at a time, one flare at a time, one quiet hope at a time.

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook, Instagram, and X for more stories like this, using the hashtag #ANCASpotlight, or read the full series.