Rhian says that the one thing she wants people to do when they see Koran is to "just come up and say hi."
He feels lonely and isolated by his condition, even though it's only skin-deep.
“A lot of children look and stare at Koren because they don’t understand what he’s got," she told the Daily Post.
She tells the newspaper that even some medical professionals aren't familiar with the disease, and she's trying raise awareness so parents of children like Koren know what they're in for.
When Koren was born, Rhian's nurse thought the brown stains on his skin - the first symptom of neurofibromatosis - were just birth marks.
It took 6 years until a doctor correctly diagnosed her son, and she wants to make sure that doesn't happen again.
"We want to raise awareness so other people are aware of the symptoms and so no other parent has to go through what we have been through with Koren," she said.
If you want to support Koren's family, you can donate to his brother Aled, who is running a half marathon to raise awareness about his condition.
Share this story so everyone can learn about Koren!