The Rare Reality.

Sixteen years ago, on April 2, 2008, our world changed forever. Brodyn entered this world with a future unknown, a journey we could never have anticipated. From the moment he was born, something felt different. But despite my instincts, doctors reassured me—“he’s fine, just a little jaundice.”

When I gave birth to Luka, I expected to welcome a healthy baby into our lives. We had chosen to keep his sex a surprise, and I was overjoyed to learn I had another son. However, my joy quickly turned to concern when Luka never woke up, ate, or cried after birth. Despite reassurances that this was normal, we were sent home with syringes to feed him.

Becoming a mother again should have been a moment of pure joy. But when my daughter, Nora Jane, was born on July 4, 2016, I unknowingly stepped into a role far beyond motherhood—becoming her nurse, therapist, pharmacist, and fiercest advocate.

February is Rare Disease Awareness Month, a time to shine a light on conditions like Nonketotic Hyperglycinemia (NKH)