At 4 years old it burned Savannah Fulkerson to go outside. Living in California, her parents didn’t understand why Savannah couldn’t be in the sun without getting very uncomfortable and, in many cases, start screaming in pain. It was as if Savannah was allergic to sunlight.
Andrea Fulkerson, Savannah’s mother, remembered times before Savannah got diagnosed when they’d have to leave the pool after only 20 minutes because Savannah would scream that she’s burning. Savannah described the pain as if hot lava was being poured all over her body.
After many unsuccessful visits to their pediatrician, they finally found a doctor (Dr. Minnelly Luu) at the Children’s Hospital in Los Angeles who correctly diagnosed Savannah’s rare condition as EPP (Erythropoietic Porphyria). EPP is a condition where sunlight will cause exposed skin to burn. Savannah described it as being “allergic to sunlight.”
Why such a long time for diagnosis?
Dr. Luu said that EPP can be extremely difficult to detect and it wasn’t until Savannah did a blood test that she confirmed Savannah’s condition.
Although painful to know that her life would certainly change, it was a relief for the Fulkersons to understand the cause of Savannah’s pain and have a plan for dealing with (and eliminating as much as they could) the pain.
As you’ll see on the video, Savannah’s a sweet, fun-loving girl who’s learned to make best of the situation and is moving on with her life. She even gets some things that many 11 year olds would be extremely jealous of (like a trampoline in her living room).
Please watch the video to see Savannah’s inspiring story and make sure to share it with your friends.
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