03/03/2026
Rare often means valuable.
Rare can mean special.
Rare can mean one of a kind.
But in medicine, rare means something very different.
It can mean there is no established treatment plan.
It can mean your child’s case is presented to an entire department because there isn’t a clear protocol to follow.
It can mean doctors don’t yet know the outcome, the long-term impact, or the best course of action—simply because there are no studies to guide them.
Rare, in this context, means uncertainty.
It means fear of the unknown.
It means navigating uncharted territory as a parent.
We live this reality with our own children. We understand the fear, the uncertainty, and the desperation that can come with loving and advocating for a child with a rare medical condition.
Today, we recognize and stand with the parents of these medical “unicorns.”
It’s a community no one chooses to join—but one defined by resilience, strength, and unwavering love.
