[KHTS] – Summer in Santa Clarita feels a bit different for Savannah Fulkerson, an incoming sixth grader at Mountainview Elementary who was diagnosed with a disease that makes her essentially allergic to the sun.

The 11-year-old has erythropoietic protoporphyria, also known as EPP, a disease that gives her painful reactions to sunlight and intense heat.

See her fundraising account [here].

“She’s been having reactions since she was 4 years old,” said Andrea Fulkerson, Savannah’s mother. “She would cry and say she was hurting.”

The doctors always told Andrea that it was eczema, and they saw different doctors over the course of five years.

A doctor at the Children’s Hospital Los Angeles diagnosed Savannah with EPP when she was 9.

“She has reactions after being out in the sun after about 10 minutes,” Andrea said. “It’s a blood disorder, and there is no medication for it as of yet.”

The disorder also affects the Savannah’s liver, so she will have to be extra careful about alcohol when she is older, Andrea added.

The family has lived in Saugus for 15 years, and Savannah’s life at school has changed dramatically after being diagnosed.

“She cannot participate in recess or lunch, she eats indoors,” Andrea said. “She can participate in P.E. if it is being held indoors or is in a very shady area.”

The disease is hereditary, and Andrea believes her grandfather suffered from the same disease his entire life and was never diagnosed.

“He used to not be able to work outside and would sit with fans on his feet and talk about how much they hurt,” Andrea said.

Savannah enjoys gymnastics, and cheers for SCV Cheer, although sometimes the gym becomes too hot and she can no longer participate.

“The FDA may be approving a drug over the next year that could one day help Savannah,” Andrea said. “It is an injection she would need every few months.”

Savannah has one older sister, a 15-year-old who admits that she misses a pastime the family used to love — going to the beach.

The family starts their day in the evening, leaving for activities such as Disneyland at 4 or 5 p.m.

Savannah went to Hurricane Harbor recently with her family covered from head to toe, including swimming shoes, gloves and a hat, but they were forced the leave after a few hours because of the hot summer weather.

“It doesn’t define me, it’s not going to change what I do,” Savannah said. “I’m still going to have a normal life.”

Savannah has a fundraising account here, when her family hopes to raise enough money to send her to camp and also cover the swimming pool at their home so she can use it during the day.

More about the fundraising campaign, from Andrea Fulkerson

We would like to send her to Camp Sundown where children and their families with this disorder can network and play together. We are also raising money for home adjustments to help Savannah be more comfortable in her own home. About $4,000 to $5,000 will go to sending our family to Camp Sundown, airline tickets, etc.

Then we are trying to find away to cover our pool make it like an indoor pool but it’s outside so she can swim in the day. And we have the room she plays in all the time that need window coverings to keep the light out.