Recognizing the powerful role siblings play in the rare disease journey
This reflection honors the siblings who quietly support, include, and uplift through the challenges of rare disease. Often unseen, their empathy, flexibility, and love help preserve moments of childhood and remind us that they are also part of this journey.
Rare disease takes so much from families. It reshapes expectations, redirects energy, and introduces layers of grief, financial strain, and uncertainty that most rarely understand. As parents, we often find ourselves navigating this and mourning the vision of the family life we once imagined, all while doing everything we can to hold things together.
But in the midst of all that is lost, we don’t talk nearly enough about what rare disease gives.
It gives us patience we didn’t know we could develop.
Perspective that reframes what truly matters.
Gratitude for the smallest, most ordinary moments.
And faith to navigate it all.
Perhaps the most powerful revelation is the extraordinary strength of the siblings.
In almost every conversation I’ve had with families navigating a child’s rare disease, one truth rises to the surface again and again: siblings are the real MVPs.
These children witness things that many adults struggle to face. They see someone that they love ‘to the moon and back’ face hospitalizations, flares, and limitations that alter everyday life. And yet, they show up, authentically, with grace, flexibility, humor, warmth, and empathy beyond their years.
While we, as parents, are often pulled into the logistics and demands of managing the day-to-day life of a rare disease: medical bills, accessibility, treatment decisions, emergency planning; siblings are quietly doing something just as important.
They are preserving childhood. They are making sure their sibling lives their Best Kid Life… by any means necessary.
They are the ones who make sure their brother or sister is included in the game.
They are the ones who adapt play without being asked.
They are the ones who protect, advocate, and include, instinctively.
I remember a time early in our journey when my daughter was too sick to attend school. Her muscle pain and weakness made even partial days impossible. Each afternoon, without fail, when her older brother and younger sister came home, they made a beeline straight to her.
They would sit on the floor beside the couch where she rested and share everything, who sat with whom at lunch, the latest classroom gossip, and who asked about her. They brought school to her. They made sure she was still part of it all.
And then they played.
Not in the ways they once had, but in new, creative ways they discovered together. They told stories; each taking turns adding to the narrative, building something shared and joyful in the middle of a difficult season. It was simple, organic, and profoundly beautiful.
They were determined not to leave her behind.
To this day, I believe those moments helped shape her resilience and positive outlook during some of her hardest years.
THAT is the power of siblings.
So today, let’s pause and notice them. The siblings who love fiercely, adapt endlessly, and remind us that even in the middle of hardship, childhood and connection can still find a way.
by Ronda Thorington, MA, LPC
April 2026