07/24/2025
“No one gives you a guidebook for this kind of parenting…”
But you don’t have to figure it all out alone.
“When my child was diagnosed with Niemann Pick type C, I felt lost.”
There were therapies, appointments, acronyms I’d never heard of and a grief I didn’t expect.
I was a parent, but suddenly I had to become an advocate, expert, and emotional rock.
“One of the harder parts was the isolation.”
Family couldn’t fully understand.
Friends meant well, but they couldn’t relate.
“Things changed when we found the extra support.”
For the first time someone listened without fixing. They shared their experience navigating life with children with different medical needs.
“Now I am that support for other parents and caregivers navigating this thing we call life.”
As a Family & Caregiver Peer Support Specialist,
I walk beside families navigating the unknown because no parent should feel like they have to do it alone.
If this story feels like yours… you’re not alone.
Reach out to see how our specialist can support you.
💬 Share your story in the comments
🔁 Or send this to someone who needs to feel seen today
