Our Story

Learning to Breathe Through the Hard Days: Finding Joy, Community, and Healing as a Rare Disease Mom
Learning to Breathe Through the Hard Days: Finding Joy, Community, and Healing as a Rare Disease Mom
|Kursti Young
Parenting a child with a rare disease is a mix of love and fear. I’m scared of the resistant bacteria we’re facing and waiting on word about phage therapy. People... Read more...
When You Hear: “Resistant to Everything but Two — and She’s Allergic to One”
When You Hear: “Resistant to Everything but Two — and She’s Allergic to One”
|Kursti Young
“Nothing prepares you for hearing a doctor say the bacteria in your child’s lungs is resistant to every drug but two — and she’s allergic to one. After 28 days... Read more...
What Families Wish You Knew About Hospitalizations
What Families Wish You Knew About Hospitalizations
|Kursti Young
“Hospitalizations aren’t just about IVs and rest. They touch every part of family life — from finances to siblings to emotional survival. For rare disease families, what looks like a... Read more...
When the Weight Feels Too Heavy
When the Weight Feels Too Heavy
|Kursti Young
This hospital stay feels heavier than the last. Jentri’s on precautions, stuck in her room coloring and watching movies all day. She has her moments, and so do I. The... Read more...
The Real Cost of Chronic Illness
The Real Cost of Chronic Illness
|Kursti Young
It’s not the bills — it’s the sleepless nights, the extra plane tickets, and the constant “what if she gets sick? Or what does her future look like?”💙 Read more...
Why Jentri Has Two Medical Teams — And Why That Matters
Why Jentri Has Two Medical Teams — And Why That Matters
|Kursti Young
Jentri’s lungs are complicated — so her care is too. She sees two specialist teams: one for her PCD and another for her Atypical CF, because each condition requires its... Read more...
Raising Siblings of a Medically Complex Child: The Balance No One Talks About
Raising Siblings of a Medically Complex Child: The Balance No One Talks About
|Kursti Young
They don’t have the diagnosis, but they live the lifestyle. Brantleigh and Maveryk carry the bags, make the sacrifices, and show up with quiet strength—every flight, every hospital stay, every... Read more...
I Thought I’d Be a Pinterest Mom—Turns Out I’m a Chaos Coordinator (With Great Taste in Tumblers)
I Thought I’d Be a Pinterest Mom—Turns Out I’m a Chaos Coordinator (With Great Taste in Tumblers)
|Kursti Young
✨ I thought I’d be a Pinterest mom. Turns out I’m more of a chaos coordinator with a HydroJug full of sweet tea, a Kyte biker set on, and a... Read more...
Difference Between PCD and CF—having both?—Why Awareness Matters.
Difference Between PCD and CF—having both?—Why Awareness Matters.
|Kursti Young
What do you do when your child is diagnosed with not one, but two rare diseases? For us, it meant entering a world of unknowns, daily treatments, and double the... Read more...
A Day in the Life: From Class Assignments to Crafting Tees After Bedtime
A Day in the Life: From Class Assignments to Crafting Tees After Bedtime
|Kursti Young
Running a business, going to school full-time, raising kids, and living in a fifth-wheel RV? Yeah… it’s a lot. Our days don’t follow a typical routine, but they’re full of... Read more...
Raising a Teen with Rare Illnesses: The Battle Between Letting Go and Holding On
Raising a Teen with Rare Illnesses: The Battle Between Letting Go and Holding On
|Kursti Young
Teenage hormones and chronic illness—two things no parent is ever truly prepared for. Add in homeschooling while living full-time in a 44ft fifth wheel? Some days I feel strong. Other... Read more...
Mom Guilt, Medical Burnout & Caregivers Exhaustion=Balancing My Needs with My Kids’
Mom Guilt, Medical Burnout & Caregivers Exhaustion=Balancing My Needs with My Kids’
|Kursti Young
Being a medical mama comes with an invisible weight—one that includes burnout, guilt, and the pressure to do it all. In this post, I open up about what it really... Read more...