Jace was born in St Joseph Missouri on Nov. 22, 2023 and was an otherwise typical labor and delivery. Moments after Jace was placed on his moms chest they noticed that something was different. Jace was diagnosed with a condition called Giant Congenital Melanocytic Nevus (GCMN) & Neurocutaneous Melanocytosis (NCM). A 1 in 500,000 chance. His parents since diagnosis have been documenting his journey. They hope to educate, spread awareness, and hopefully someday find a cure. For GCMN & NCM support and to read more stories about others like Jace please check out Nevus.org. An outreach and nonprofit that works hard to fund research for the condition.

Keep scrolling to read Jace’s story.

Jace’s story told by his mom:

Jace’s delivery was much like my previous 3; quick, “uneventful”, and exciting. That was until they placed him on my chest. Within a few seconds, he was whisked away as his nurse asked if I minded if she took him for a second, which didn’t seem like a question but more of a request. This was a little different than the previous 3 skin to skin deliveries I had experienced before, but I didn’t think much of it. I figured maybe they just needed to clear his airways.. that was until Justin mentioned he had a “large” birthmark on his back. My eyes were glued to the warming table across the room as my doctor palpitated my stomach in attempts to deliver my placenta. I couldn’t even focus on what was being done to myself as I watched helplessly from the hospital bed at my son. One pediatrician came in and then an RN. I had not fully seen the extent of Jace’s condition yet as the only thing I had seen was his front side, and from there, he seemed normal. They turned Jaces back towards me, and my stomach sank. I remember muttering “Is that… okay?”. Surely a birthmark that large, couldn’t be.. healthy. Everybody seemed so secretively nonchalant about what was happening that we really didn’t think much of it. But knowing what I know now, I just truthfully think they were not educated about his condition.

That night my curiosity got the best of me and I fell down the Google rabbit hole. Giant Congenital Melanocytic Nevus. “Cancer”, “Melanoma”, “Seizures”, “Mortality of 63%”, “Death”. The words blurred together through tear filled eyes. How could God give me such a medically complex child when I already had crippling anxiety over my children with your everyday germs? How am I supposed to care for a child that I could see leave this life before me? I had never experienced such extreme emotions in such a few short days. I was selfishly angry that the excitement of the birth of our first son was quickly overcome by anxiety, fear, and doubts. Justin and I had waited so long to welcome a son into our family, and for lack of a better word, I felt like that was ruined. I blamed myself, I questioned myself, I almost felt like it was a punishment for something. My emotions couldn’t process what was happening. We spent an extra, unexpected, 4 days in the hospital under bili lights. Because despite what was already thrown at us, why not add another curveball into the mix. Secretly I felt a sense of peace having to stay a few extra days (although my mental breakdowns would say otherwise). To be honest, I was scared to take this child home. I was scared to be away from medical professionals that could help me if something went wrong. I was so uneducated about what was going on, that I was afraid of my child.

It was 5pm Monday evening when Children’s Mercy called. I had told myself that I had come to terms with Jace’s condition, no matter the outcome, but I knew that was a lie. Every feeling I had experienced those first few days of his life came crashing into me like a wave as the voice came through on the other end of the line. Each word that the doctor spoke made my body burn hotter. My stomach was in knots. Why us? Why this sweet innocent baby? I had been preparing myself for the worst, but I still couldn’t grasp reality. I immediately did what I had done the night of his first diagnosis, and found myself a support group. Except this time, every post I read had an obituary attached in the comments. I was falling into a very dark space and I wasn’t sure how I’d ever pull myself out.

The next morning my phone rang, and on the other end was a doctor named Dr. Le Pichon, who personally called us on his day off from his basement office to give us our Christmas gift; hope. Not all of what Dr. Le Pichon said was hopeful, but it was enough to allow me to peek out of that dark hole I found myself spiraling into. He gave me the hope that Jace can live a very normal life.

Our son, Jace, was born with two rare diseases: Giant Congenital Melanocytic Nevus (GCMN) and Neurocutaneous Melanocytosis (NCM). Jace was born with a dark mole/birthmark covering 85% of his back and smaller ones spread across the rest of his body. A 1 in 500,000 chance. What we didn’t know at the time of his birth was that those moles had also spread to his brain during development.

Jace’s condition comes with a lot of unknowns for his future. He is more at risk of developing central nervous system melanoma and many other complications from NCM. While Jace has already experienced some of those, including seizures at 6 weeks old, we are hopeful that we will not see anymore disease progression. We know that in our lifetime we will probably never see a cure for Jace, but we hope that we can make a difference for those babies born with his condition in the future.

GCMN & NCM Support

To learn more about Jace, find GCMN & NCM support, or follow him along the way you can follow him on Facebook, Instagram, and Tik Tok.

For GCMN & NCM support and to read more stories about others like Jace please check out Nevus.org an outreach and nonprofit that works hard to fund research for the condition.