LOCAL COUPLE SHARING THEIR STORY TO RAISE AWARENESS OF RARE CONDITION
- Anna LaBay
- 1 day ago
- 2 min read
Southwest Neb. — What started as a few simple videos has turned into something much bigger for Justin and Holly Hamilton.
The southwest Nebraska couple has recently begun sharing pieces of their life online answering questions, telling their story, and helping others understand a rare condition that many people have never heard of.
Justin was born with congenital erythropoietic porphyria, or CEP, a rare genetic condition that makes exposure to ultraviolet light extremely painful and damaging to the skin. Often described as being “allergic to the sun,” the reality is more complex, affecting everything from skin and vision to overall daily life.
For Justin and Holly, the decision to start posting wasn’t about attention it was about understanding.
“We had people asking if this was real, if it was AI,” Holly said in one of their videos. “So we wanted to get on and explain what this is.”
What they didn’t expect was how many people were listening.
After one of their videos circulated, Holly said a parent reached out to thank them sharing that it helped her explain Justin’s condition to her own children after they had questions.
Moments like that have reinforced why they’re choosing to share.
“We just want people to understand,” Holly said.
Along the way, their videos have offered a glimpse into both the challenges and the strength behind their everyday life often with humor, honesty, and a strong sense of perspective.
Justin, who grew up in southwest Nebraska, describes his experience in simple terms when talking to others: time in the sun can cause immediate pain, blistering, and long-term damage. Over the years, that damage has affected his vision and led to other complications.
Recently, Justin underwent an extensive facial reconstruction surgery a major step aimed at improving his quality of life. The procedure, which lasted around 10 hours, is part of an ongoing process to help protect his remaining vision, improve breathing, and reduce chronic infections.
“This wasn’t about looks,” Holly said. “This was about helping him live better day to day.”
Recovery will take time, but throughout it, the couple has continued sharing updates giving others a real look at both the hard moments and the hopeful ones.
Through it all, one thing comes through clearly: their focus on family, faith, and each other.
The couple, married for nearly 15 years, has four children together — and say they were intentional in making sure their kids would not inherit the condition.
Their story isn’t something they try to tell all at once. Instead, they’re sharing it piece by piece answering questions as they come and opening the door for conversation.
“We’re an open book,” Justin said. “If people have questions, we want them to ask.”
For the Hamiltons, the goal is simple.
Not sympathy. Not attention.
Just awareness and maybe helping the next person feel a little less alone.
“Awareness is key,” Justin said. “The more people know, the better.”
Follow Justin and Holly on Facebook.
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