Weston was born with hundreds of brown and pink spots on his face, head, and down his spine. The nurses were confused and took Weston away before his mother could even process what was happening. Neurocutaneous melanosis is a rare congenital syndrome with a 6.5 month life expectancy. These spots were inside Weston’s body, causing them to push on the nervous system or become cancerous.
Luckily, after some tests, none of these dots were considered cancerous. With this syndrome, it's possible that these dots can become active one day. Looking out for symptoms was the safest way for Weston’s parents to know if those dots ever become active. After even more testing, a doctor found that many cancerous cells carry the same gene rearrangement as the mutation he had. This helped the doctors identify the target for future care. Today, Weston is approaching 18 months old and has regular checkups to be certain there are no changes.
Children around the world are dealing with similar problems, trying to find ways to make sure they are as healthy as possible. This is also extremely hard for the parents who want a straightforward answer to know their child is safe. This is unfortunately not the case for many people, and being aware of that and supporting these parents is the best thing we can do.
This is my son. I am honored that you decided to write an article to spread awareness for CMN & NCM. Thank you!