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Journey with Jace

Join us in celebrating Rare Disease Day by supporting Jace!

 It was our 4th pregnancy, another normal and uncomplicated pregnancy, but all of that changed within seconds of our delivery. Little to our knowledge, we had been baking the most perfect chocolate chip cookie. 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;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.   

Jaces condition comes with a lot of unknowns for his future. He is more at risk at 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.   

We are here to educate; to inform you about his condition and tell you our story. We are here to advocate; to be a voice for these children who may not feel heard. We are here to support; to be a community to lean on for families who are desperate for answers. We are here for research; to find a cure. We are here to rally for rare. Together, we can make a difference.   

Together, with Nevus Outreach, we can find answers, and the most important weapon in doing that, is you! Please help support us by donating!   

To learn more about our journey and to follow us along the way, follow us on Facebook and Instagram 

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