Middle school is hard enough, but imagine going through it with your body covered in skin tumors.
Emma Gors has a rare disease called Juvenile Xanthogranuloma. You've probably never heard of it, because it only occurs in half of 1% of all cases of childhood cancer.
Emma Gors says her condition first appeared as a bump on her head when she was 10. Gors says "We were at Disney World and my mom was doing my hair and we found one and it was on my head." Her mother Jessica Gors thought it was chicken pox, but then more bumps appeared and started traveling down Emma's body. Eventually she was covered from her head to her ankles.
Later they learned the bumps were tumors. Gors says "I just don't like it. I just wish it would go away pretty much." "Watching her go through it and not knowing how to stop it, that was the hardest part," says Emma's mother.
Emma met with doctor after doctor, none were sure what it was or how to treat it. Emma's been through five different treatments including two types of chemotherapy. Dr. Dennis O'Brien a Pediatric Hematologist & Oncologist with Luther Children's Hospital says "Emma's case is probably one one-hundredth of what the normal childhood rate is."
Doctors say it won't kill her, but it will impact her quality of life. Still on the search for a cure, now Emma is undergoing UVB treatment. It looks like a tanning bed, but only gives off a specific type of radiation. Emma says it seems to be working.
Emma's whole goal of going on camera to talk with us is to spread awareness. She says "If there are people out there that have this that feel like they don't have any answers if people see this then if anybody can look it up or help, or they can think about what might help." Emma took her message to New York this past week. She attended a conference for people with her same condition and even got on The Today Show.
Emma's mother says people need to know about this disease because it's commonly misdiagnosed. Jessica Gors says "The Foundation is really just trying to get the word out and get it more in the main stream so people are aware to check for it."
If you want to help out or learn more visit Liam's Lighthouse Foundation. http://www.liamslighthousefoundation.org/
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