Jace is our 1 in 500,000. 

His birth was supposed to be one of the happiest days of our lives. But within moments of meeting him, we learned that the large birthmark covering much of his back was a Giant Congenital Melanocytic Nevus (GCMN). 

At just three weeks old, Jace's MRI confirmed Neurocutaneous Melanocytosis (NCM). Three weeks later, he began having seizures. It seemed like every time we started to catch our breath, we were faced with something new. 

Today, Jace continues to navigate life with NCM and childhood apraxia of speech. He works incredibly hard to communicate, and even when his words do not come easily, he keeps trying. His challenges do not stop him from being the funny, stubborn, incredibly cuddly 2 and a half year old he is. 

Jace loves dinosaurs, sharks, and cars, and he has a personality all his own. Somehow, he manages to bring joy and laughter into even the hardest days.

Jace has taught us that life does not always look the way we imagined it would, but that does not make it any less beautiful. He has made us stronger, more compassionate, and more determined to raise awareness for children living with rare diseases. 

His challenges are part of his story, but they do not define him. Jace is tenacious. He reminds us every day that sometimes the strongest people are the ones who simply keep going. As much as Jace needs us, we needed him. 

Why Awareness Matters 

Awareness matters to me because I want people to see Jace before they see his diagnoses. I want others to understand that children with rare diseases are not defined by their medical challenges. They are funny, stubborn, loving, adventurous kids with big personalities, big dreams, and so much to offer the world.