🌞 11-Year-Old Girl Battles Rare ‘Sun Allergy’ Condition That Keeps Her in the Shadows
Los Angeles, CA – June 2025
While most children spend their summers outdoors, riding bikes and playing in the sun, 11-year-old Savannah Fulkerson has a very different life. For Savannah, even a few minutes of sunlight can lead to intense burning pain — not from heat, but from a rare condition that makes her skin react violently to UV rays.
Savannah suffers from Erythropoietic Protoporphyria (EPP), a genetic disorder so rare that it took years of medical visits and misdiagnoses before doctors finally discovered what was wrong. “It felt like fire crawling on my skin,” Savannah recalled. “I would scream every time I went outside.”
The condition is caused by a buildup of a light-sensitive chemical in the blood. When exposed to sunlight, even indirectly, it activates severe phototoxic reactions — burning, swelling, and deep pain without any visible sunburn. Her skin may appear normal, but the agony she experiences is very real.
After being diagnosed at Children’s Hospital Los Angeles, Savannah and her family learned to adapt. She now wears UV-blocking clothes, arm covers, and wide hats. Most importantly, she carries a large protective umbrella every time she steps outdoors — a shield between her and the invisible rays that could harm her.
But Savannah isn’t letting her diagnosis define her. With determination and a bright spirit, she participates in indoor gymnastics and even joined a cheerleading team that practices at night. “She’s incredibly brave,” her mother says. “She’s teaching everyone around her about strength, resilience, and how to live differently.”
Although there’s no cure for EPP yet, researchers continue to study potential treatments. Meanwhile, Savannah continues to raise awareness, helping other children who feel isolated by rare conditions find hope and community.
“My dream,” Savannah says, “is to go outside without pain — just to feel the sun on my face.”
Until then, Savannah lives in the shadows — not in fear, but in strength.
