The Rare Reality.

At just 5 days old, Tucker was rushed to the hospital because he had all but quit breathing on us. Once he got to the ER, he was immediately intubated. That night he was life-flighted down to the children’s hospital in Baton Rouge, where we would spend just over the next month.

Luka’s inspiring journey with NKH, respiratory failure, and a tracheostomy — and the resilience that continues to define his life.

Our life with NKH has been crazy, to say the least. But it has also been incredibly rewarding. At just 4 days old, Braylynn stopped breathing in my arms. Without thinking, I got in the car and rushed to the nearest ER, where she was immediately intubated. All of the nurses and doctors in the ER rushed to her room, some working, some hovering, some running around to get what they needed.

Amelia was never just a diagnosis. She is a little girl with a big heart, fighting quietly and bravely every single day. Amelia was born with a rare disease called Nonketotic Hyperglycinemia (NKH) — a condition that affects the brain and turns the simplest things we take for granted, like swallowing, sitting, or controlling her body, into daily challenges.

My son Thaddeus was born February 10th 2024. What should have been the happiest moment of life, became a nightmare. Newborn Thaddeus in the NICU After 12 days of watching my child never cry, never open his eyes and need ventilator support we had our diagnosis, Non Ketotic Hyperglycinema. From that moment life changed, but I'm here to share our story and offer hope.

How Much Are You Willing to Fight? It’s easy to stand on the sidelines. It’s easy to watch others carry the weight. It’s easy to complain that nothing is changing while waiting for someone else to make it happen. But change does not come from waiting. Change comes from movement.

When your child is diagnosed with NKH or any long term illness or cancer, your nervous system doesn’t get a choice. You’re thrown into survival mode.

When I was pregnant with Braylynn, everything was perfect. No complications, no warning signs—just the joy and anticipation of welcoming our

Maggie Jack was born like any other baby—beautiful and full of promise. But within hours, something wasn’t right. She began having seizures

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)