Like A Marathon, Kristin takes every day of advocacy step-by-step.

The Nichols family were elated when finding out they were pregnant with their second bundle of joy. Kristin endured all the necessary ultrasounds, genetic testing and careful monitoring of her pregnancy. The tests and images never raised any red flags, and the results gave the couple peace of mind that their little boy was healthy.

“I had 3-D Ultrasounds and there was no indication his nevus was present.”

Amid the 2020 covid lockdowns, Chris and Kristin managed to make their way to the hospital to welcome baby Andrew, on Independence Day. The minute he was born, the couple saw a dark pigment around Andrew’s eye. Their room filled with doctors who called in more experts from Boston Children’s Hospital, located just across the street. Shortly after, Andrew was diagnosed with “a kissing nevus,” a rare, congenital birthmark that appears as two adjacent nevi on the upper and lower eyelids that "kiss" when the eyelids close.

During a time when Covid vaccines didn't yet exist, and lockdowns were still the norm, postpartum depression loomed over Kristin. The Nichols family began juggling the specialist appointments needed for Andrew. At 6 weeks old, Andrew had an MRI completed to look for the presence of Neurocutaneous Melanosis. “It was really jarring to put him in the (MRI) machine. Not knowing what you’re going to find out. Neurocutaneous Melanosis... what does that even mean? Will it shorten his life? Will it impact his life, his learning, his relationships? All these things swirl on top of the physical abnormality, on top of the melanoma risk…” A breath of relief came over Kristin and Chris when the results returned with no findings of NCM in his central nervous system.

The determined family didn’t let Andrew’s nevus stop them from being a part of the local community, even though that meant the occasional rude encounter. "I remember we were at a local restaurant, and the waitress asked us, 'Who gave you the black eye?'...It was challenging to overcome." At the time, even their 3-year-old daughter, Vivian, could see that some people were not as kind and understanding when it came to Andrew’s facial nevus.

The couple realized there had to be a way to combat the encounters by advocating for their son. They created personalized business cards that encourage curious inquisitors to find out more about CMN. These cards have made it easier for the family to combat the common remarks given when traveling outside their beloved Boston area, where encounters and questions from strangers tend to occur frequently.

Some of the encounters have left the family worried about Andrew’s mental health, especially now that he is in a Pre-K program and about to enter public school next fall.

Kristin knew the best way to empower Andrew was to be his #1 advocate. Aside from reading books to his classmates about accepting differences and becoming close friends with other families sharing a CMN diagnosis, Kristin set her sights on 2 bibs for their favorite event, the Boston Marathon.

Since 1897, The Boston Marathon has been recognized as the oldest annual marathon in the United States. It is a prestigious running route with over 500,000 spectators a year. The Nichols live in Hopkinton, where the Marathon begins. The town has a raffle each year that allows community members to enter to win bibs for the nonprofit organization they represent. Running Boston is the pinnacle for most runners. Bibs are coveted and difficult to come by. We are hopeful Kristin will win the town raffle and obtain bibs. We are all ready to help Kristin with her goal of $7,500 per bib for Nevus Outreach. We are hopeful to make this an annual way to celebrate our nevus owners and spread awareness!

“We are held so tightly by our local and virtual community…we are all doing our best to cast a wide net, get the word out there, get the funds raised. It feels like we’re on the cusp of something substantial.”

The Nichols family knows the impact fundraising has on the Nevus community in terms of research, support, and longevity. After two years of Kristin volunteering and fundraising for CMN research, the Nevus Outreach nonprofit team is so pleased to announce that Kristin has officially joined the fundraising committee!

Kristin, Chris, Vivian, and Andrew are looking forward to meeting their fellow nevus families at the upcoming 2026 Nevus Outreach conference in Orlando, Florida.

When asked to leave an encouraging word for new CMN families, Kristin says

“Welcome! You are about to have a whole community to hold you. We

certainly feel held. It’s going to be okay. On the dark days, reach out to someone. There will always be someone there to help you see the light”.

We appreciate the Nichols family for sharing Andrew’s nevus journey with us, and for their commitment to making the future better for our nevus families.

Step-by-step, we are running towards the finish line: a cure.

We cannot do it without our amazing team of volunteers and community cheering us on. Will you help Kristin meet her goal?

Make a Gift to Nevus Outreach

---

Would you like to share your story?

Visit: nevus.org/shareyourrare