Now a local mother, who was born with the rare disease, is speaking out as her son undergoes his own battle with neurofibromatosis type 1 (NF1).
At four weeks old, doctors found a large plexiform tumor behind Bryson's eye, face, and brain.
"During the treatment, his tumor remained stable. The treatment is doing its job, but right now we're stopping because he's on all sorts of steroid creams for his skin," said Bryson's mother Lindsey Marson.
NF is a condition that causes tumors to grow in the nervous system, something Marson also has.
"I have the tumor as well, they just present themselves outside of my body," she said.
Her right leg was bowed at birth and now she is forced to walk with a brace because she says it breaks very easily.
Most symptoms of NF range from multiple spots on the skin, small benign growths on or under the skin, possible hearing and vision loss, and facial weakness.
Marson says watching her 1-year-old endure his own battle has been a challenge, but she has remained positive.
Spreading awareness is top of mind as May is NF Awareness Month, but she's also showing others her son is no different than any other 1-year-old.
"I hope that people can realize he is completely normal, he's perfect. He's just like everybody else," said Marson.
In the meantime, Marson says doctors will be monitoring his tumor to see if it grows.
If it doesn't, he'll keep getting routine MRIs.
If it does, they're going to try to get into another chemo trial.
On Wednesday, CHOP will light up green and blue to bring awareness to neurofibromatosis.