Finding Light in the Darkness – One young girl endures through a painful ‘allergy’ to the sun

When 4-year-old Savannah Fulkerson started screaming and writhing in pain from the touch of direct sunlight, her mother knew something was deeply wrong.  Some days Savannah would cry for hours on end.  Other times, she would feel excruciating burning and itching from just minutes in the sun.  Scratching led to blisters; blisters led to scars.  And still no diagnosis.
“She would describe the pain like hot lava – but that it burned from the inside out,” recalled Savannah’s mother, Andrea Fulkerson.
Small red welts or skin irritations would appear on her hands and other areas, and at first, the doctors diagnosed Savannah with eczema.
“I knew it wasn’t eczema; she was in screaming pain,” Andrea said.  “A parent knows when something is wrong.  You have to go with your gut and keep looking.”
So Andrea kept at it.  Finally, a doctor at Children’s Hospital Los Angeles figured it out: erythropoietic protoporphyria.  In layman’s terms, Savannah was allergic to sunlight.
Though not a true allergy, Savannah’s metabolic disorder means she is deficient in a certain enzyme, which alters the chemistry of her blood – adding up to the perfect concoction of sun-sensitive blood and plasma running through her system.  In effect, she is extremely sensitive to sunlight, and some are even sensitive to artificial light, as well.  Only 500 cases are known in the United States, and there is no cure.
“When we learned her diagnosis, it was that bittersweet feeling of: We know what it is, but there’s nothing we can do about it,” Andrea said.
It was a major adjustment. It seemed Savannah was sentenced to a life in the dark before she’d even seen how big the world was.  Since Savannah has to stay indoors during the day, she quit her soccer team and spends recess and lunch inside.  When she goes out, she wears UV-protective clothes from head to toe, with a UV-protective umbrella.  Even light through glass affects her, so she must ride in a car with heavily tinted windows.
Some kids at school made fun of her clothing and scarred hands.  Worst of all, Savannah found herself left out of her friends’ daytime, outdoor fun.
“It’s been really, really hard,” admits Savannah, who is now 12 years old. “Kids don’t understand, even when I explain it. They don’t understand the life change I’ve had to make.”
But the ponytailed, cartwheel-loving preteen refuses to let a life away from the light dim her potential.  She does gymnastics and competitive cheerleading, and her parents set up a large trampoline for her – in the living room.  She still has pool parties and enjoys Disneyland, at night.
“She tries to put on a brave face, but I know deep down she’s depressed,” Andrea said.  “It’s sad to watch my kid stand in the shade while the other kids play.”
But Savannah sees the light.
EPP “doesn’t define me,” Savannah says firmly.  “I still want to have a house on the beach someday.  I’m still going to go to amusement parks.  I’m going to do everything I possibly can.”
She also is able to meet up with other kids who have her same disorder or other skin disorders, which helps her keep things in perspective.
“I can still do things other kids can’t,” Savannah says. “I’m better off than some.
“I’m grateful for what I can do, but it sucks not being normal.” 

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