The Rare Reality.

What does Rare Disease Day mean to you? It has so much meaning to me. It hits personal. Some years on this day, I am filled with hope. Some years on this day, I am tired. Tired of fighting for what our children need, but then I think of all the rare disease warriors who fight to live and breathe, and I remember my why!!

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.

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.

List of known NKH Research Publications