The story of Kimberly Marie Phelps
Weston was born late September 2022, in a little hospital near Monterey, CA. When they placed him into our arms, we were surrounded by grimaced faces. Physically, his skin was covered in several dark brown and blue spots scattered all down his back and legs, the largest birthmark being his forehead. The doctors were baffled as they’ve never delivered a baby with this congenital skin condition before. A high risk of skin melanoma in sunny California seemed hard enough.
We found ourselves at a children’s hospital when he was 21 days old, for a sedated MRI of the brain and spine, to rule out a secondary rare disease called Neurocutaneous Melanosis (NCM).
The likelihood of his condition existing in his CNS (central nervous system) was very low since majority of kids with Neurocutaneous Melanosis are children with Giant Congenital Melanocytic Nevus (GCMN), and Weston’s CMN was diagnosed as 3 medium nevi with “satellites”. That night we received the news that he unfortunately did have NCM, and there was nothing we could do but monitor and follow-up with specialists every 3 months. Google was my worst enemy as I stumbled across statistics… NCM diagnosed children live to the average age of 4.5 years old. As you can imagine, the joy of having a sweet little newborn turned into fear & grieving for his future.
Immediately, his father and I poured our time and efforts into creating awareness for CMN/NCM using Instagram (IG:WESTONDOSSSTRONG). Early on in his journey we found an online support nonprofit called the Nevus Outreach. We were given resources and tips on what specialists to see, as well as find hope in seeing kid’s much older than 4.5 with a NCM diagnosis, thriving.
Our son Weston is now 2.5, with asymptomatic NCM. We still struggle with the unpredictability of his rare disease, but we’re using that as motivation to create a better future for those who find themselves in their own nevus journeys!