Community Voices Spotlight
Theresia and Brendon Peterson
Parents of Henry, NPC
Tell us a bit about you and your family…
We are the Peterson family! Home is wherever Henry is❤️. We live just outside of Minot, ND. We were both born and raised in North Dakota but on opposite sides of the state. We spend a lot of our time outdoors: hunting, fishing, camping. You can catch us chasing around this spunky little boy or snuggling up after a long day of play. A fun fact is we have two very loving dogs, Charlie and Busch.
Sharing Your Family’s Diagnosis Journey
Our path to diagnosis might look a little different. My husband and I spent a few years undergoing fertility treatments. Once our prayers were answered, my OBGYN mentioned carrier screening due to the fact I was adopted at a young age and didn’t know much about my family medical history. We completed carrier screening and were told that our child had a 75% chance of carrying NPC and a 25% chance of being affected by NPC. We did an amniocentesis at 20 weeks pregnant to find the answer. Henry fell in the 25% and was diagnosed with NPC before birth. Henry was retested at birth as well.
How did you first learn about NNPDF, and what led you to connect with the community?
Our team was very great at finding us resources, my maternal fetal medicine specialist and the hospital social worker informed us about NNPDF and a few other resources regarding Niemann-Pick type C both before and after Henry was born. Shout out to Sanford Health.
What motivated you to get involved and stay connected with the NNPDF community?
This is our child’s life. Getting involved with the NNPDF community came from wanting to learn everything we could to support our son after his NPC diagnosis. The rare disease world can feel overwhelming and isolating but the support, shared experiences, education, and hope within the community helped us feel less alone and more empowered as parents and to advocate. Staying connected continues to motivate us because we not only gain valuable knowledge and resources, but we also want to support and encourage other families navigating similar challenges. The sense of community, resilience, and hope within NNPDF is something I deeply value.
In what ways has being part of the NNPDF community helped you and your family feel more supported?
The community has provided encouragement during uncertain moments, valuable information about care and resources, and hope through shared experiences and advocacy efforts. It has also given us a safe space where we can openly celebrate milestones, ask questions, and lean on others who truly understand this journey. Knowing there is a community standing beside us has brought comfort, strength, and reassurance to our family.
What is one piece of advice you would share with a newly diagnosed family to help them navigate the road ahead?
One piece of advice I would share with a newly diagnosed family is to take things one day at a time and allow yourself space to process everything. Remember that everyone’s journey looks different, everyone is affected differently. Try not to get lost in fear of the future, focus on loving your child, celebrating every milestone, and creating meaningful moments together. There will be hard days, but there will also be joy, strength, and hope in places you may not expect. I was mourning the death of my baby that wasn’t even born yet. I can’t get that time back. It’s okay to feel the feelings, it’s okay to cry. But don’t spend every day saddened or you’ll miss out on such beautiful moments.
What are your biggest hopes for the future for your family and the Niemann-Pick community?
My biggest hope for my own family is that Henry continues to thrive, stay healthy, and experience a full, joyful life surrounded by love, opportunity, and support. I hope we continue to make beautiful memories together while navigating this journey with strength and hope. I also hope for continued medical advancements that improve quality of life and create brighter outcomes for individuals living with NPC. We fight for a cure.
For the broader National Niemann-Pick Disease Foundation community, I hope to see increased awareness, earlier diagnoses, greater access to specialized care, and continued progress in research and treatment development. Most of all, I hope every family facing Niemann-Pick disease feels supported, heard, and connected. I pray they get the answers and cure we all need.