Finding Hope in a Hashtag: How One Mom’s Search Built Lifelong Connections

This story embodies the heart of Nevus Outreach, building connections that bring comfort, understanding, and hope. Through shared stories, social media connections, and lifelong friendships, we continue to connect, support, and empower everyone affected by nevus conditions, reminding families that even a single message of kindness can change everything.

In 2017, Jenna became a mom for the first time. Her daughter, Dani, was born perfect and healthy… except for one thing the doctors couldn’t explain: a dark patch on her leg.

“They called it a nevus, but at the time, that word meant nothing to me,” Jenna recalled. “For 24 hours, I had no answers. I did what most new parents do, I went online. I couldn’t find anything that brought me comfort. Everything I found was terrifying: medical jargon, worst-case scenarios, even children’s obituaries.”

Hashtag Hope - Connections Through Social Media

It was the height of Instagram hashtags and Facebook communities. One night, in a haze of exhaustion and fear, Jenna searched hashtags related to “nevus.”

That’s how she found another mom, Kristin, whose daughter looked just like Dani.

“That one connection changed everything,” Jenna said. “She sent me links to the Nevus Outreach Facebook groups where other parents were navigating the same thing. Inside those groups, I found not just information....I found hope.”

Kristin remembers that connection just as vividly.  For her, connecting to Jenna was more than finding another parent- it was finding someone who truly understood the confusion, worry, and love that came with raising a child with a visible difference.

“Nevus Outreach has such a special place in my heart! I was a first-time mother like Jenna — so overwhelmed with our new reality. I felt so lonely even in my own home. Hormones are funny that way… but I connected with the Nevus Outreach and immediately felt such a connection with the community.”-Kristin

Over time, the two moms began cheering for each other’s milestones, sharing updates, and reminding one another that their children’s differences were something to celebrate.

The Ripple Effect of Kindness

When Dani was just a month old, a dermatologist ran a test. The results came back with “positive indications for melanoma.”

Jenna and her husband were devastated. “We were first-time parents, completely lost, trying to understand what this meant for our baby. It was isolating and lonely — like we’d fallen into a world no one else understood.”

“Paul was the one who went out of his way to assure me that the melanoma scan we had done was nothing to worry about. He played such a big role in easing my fears as a first-time mom,” Jenna said.

Paul’s kindness and reassurance reached far beyond that single message. Though he has since passed away, his legacy continues to live on in the countless posts he made to support and comfort others. Every time a new family finds one of his old comments, they still feel his compassion, wisdom, and caring heart.

That’s the beauty of staying connected - our words, our kindness, and our support continue to make a difference long after we hit “post.”

Finding Support and Community

It was also through those conversations that Jenna found Dr. Harper Price, a dermatologist who would go on to play a crucial role in their journey.

“Dr. Price was the doctor we ended up seeing for the first few years of our daughter’s life,” Jenna said. “She was strongly recommended by the Facebook group, and she truly helped us see how beautiful our daughter was. The way she talked about it-with such awe and grace -changed how we saw everything."

More than just medical help, those families gave Jenna peace. “They taught me how to talk to my daughter about her skin. They modeled confidence and celebration instead of fear.”

A Friendship That Continues to Grow

Today, Dani is eight years old- vibrant, confident, and proud of what makes her unique. “We still visit those same Facebook pages- now to read stories about women with nevi who’ve become models, or to show Dani photos of other little girls who look just like her. It’s our reminder that connection can transform fear into empowerment.”

The friendship that began with a late-night hashtag search has grown into something special. Both Jenna’s and Kristin’s families remain active in the Nevus Outreach community- supporting, learning, and celebrating alongside others who understand their journey.

Now, they’re both looking forward to the 2026 Nevus Outreach Conference in Orlando, where Dani and Kristin’s daughter, Lyla, will have the chance to meet in person for the very first time!

It’s a full-circle moment... a reminder of how one online connection can lead to real-world friendships, shared memories, and lifelong bonds.

Why Your Online Presence Matters

Every story, comment, or photo shared in our Nevus Outreach community has

power.

When you stay active on our social media pages- by liking, sharing, or simply joining the conversation- you’re helping new families find hope faster. You’re showing them they are not alone.

Your engagement ensures that stories like Jenna’s are seen. That the legacy of people like Paul Coleman continues to shine. And that every new parent who searches for answers finds not fear- but community, compassion, and understanding.

Be Part of the Connection

Whether it’s through a Facebook comment, a tagged photo, or sharing your own journey, your presence online helps others feel seen, supported, and inspired.

---

Want to share your story? We want to hear it! Visit us at nevus.org/shareyourrare

Nevus Outreach Conference & Reunion

July 26, 2026 at 5:00 PM – July 28, 2026 at 6:00 PM EDTOrlando

Register Now