Jordan Kruse | Fighting for a Cure for OTCD
What happens when a newborn appears perfectly healthy… and within days everything changes?
In this episode of Rare Awareness Radio, we speak with Jordan Kruse, a mother, educator, and advocate whose son Pruitt was diagnosed with OTCD (Ornithine Transcarbamylase Deficiency) — a rare genetic disorder that prevents the body from safely removing ammonia. Elevated ammonia levels can rapidly become toxic to the brain, and early detection can mean the difference between survival and tragedy.
Pruitt passed his newborn screening and showed no immediate warning signs. But when subtle feeding and breathing changes appeared, Jordan trusted her instincts. By the time ammonia testing was performed, his levels were critically high — a delay that reshaped her family’s life forever.
Out of that loss, Jordan and her husband founded the Brave Little One Foundation to:
• Raise awareness of OTCD and urea cycle disorders
• Advocate for earlier ammonia testing in newborn emergencies
• Support families navigating serious pediatric medical conditions
• Help move research closer to a cure
This conversation is about more than one family’s story —
It’s about recognition, advocacy, community, and the impact of rare disease awareness on saving lives.
If you work in healthcare, are a parent, or simply want to understand why rare disease education matters, this episode is essential listening.
Learn More & Support:
Brave Little One Foundation: https://sites.google.com/view/thebrav...
Follow on Instagram: https://www.instagram.com/brave.littleone/
CureOTCD: https://cureotcd.com/
