ROANOKE, Va. (WFXR) — By almost all accounts Emma Little is just like every other 8-year-old girl. She likes dancing, hiking and even reading. When it comes time to step outside, Emma has to prepare a little differently.

“First, I put on my gloves,” said Emma. “Then I put on my two coats.”

On top of that Emma will apply sunscreen, and lip balm, dress in jeans, and top it all off with her “fan hat” which is an enclosed hood with a built-in fan for cooling.

All those layers and preparation are because Emma is one of just 80 kids in the entire country diagnosed with Xeroderma Pigmentosum, aka XP.

“There is no treatment, it’s just a matter of taking precautions. She can have zero UV exposure, so anytime that there is damage, from even one second in the sunlight, her body cannot repair it,” said Emma’s mom Johanna Sweet. “Our role is to make sure she is never exposed to ultraviolet light and that’s not just from the sun it’s from light bulbs as well.”

Put simply, Emma is essentially allergic to UV light and in turn the sun. It’s a reality that has changed her and her family’s lives in so many ways.

“It changes where we go, when we go, and how we go,” said Emma’s dad Keith Little. “We can go to the beach but it’s very different.” 

“Everything from tinting cars to tinting homes, it’s just a lot of daily things that have to get done,” added Sweet.

All those changes, steps, and precautions can understandably be a little too much for an 8-year-old girl.

“I feel really different because when other kids don’t have to put it on, they get to go to school like really quick,” said Emma. “I just feel like really frustrated every day because like you don’t really have time to do anything.”

Through the ups and downs that XP has brought them, Emma’s family is so grateful for the support they have received over the years from the community they love.

“Roanoke County Schools and Oak Grove Elementary have been amazing,” explained Little.  “Different parts of the school have been tinted and the teachers and principals, everyone has just been amazing.”

Still, with all that love and support, there are still those who stare.

“Kids can be tough, and surprisingly adults can be tough,” said Little.

So, if you happen to see Emma and her family at the playground or on a hike don’t make a comment about her gear, but feel free to say “hi” and try to be a friend.