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Local family raises awareness of NF
Rochester, N.Y. - Ryan Lampman is a typical four year-old.
He loves toys, playing at the park and technology.
He has an iPad that he knows better than I do, Ryans mom Michelle Lampman said. He's always laughing and goofing off and smiling.
You wouldn't know it, but under that smile little Ryan is battling a life-long disease.
After about six months old, I noticed a lot of birth marks and I thought maybe they're just regular marks that he was born with, Lampman said.
But it was more than that.
Ryan was diagnosed with Neurofibromatosis I, a progressive disorder that causes tumors to grow on nerves throughout the body.
Symptoms vary but can include spots and bumps on and underneath the skin.
It can also lead to blindness or cause disfigurement.
The disease can be inherited but is also caused by a genetic mutation.
Doctors found a tumor on Ryan's right eye that was pushing it out of its socket.
To treat it, Ryan needs chemo treatments once a week, which doctors say is helping.
He is doing quite well with the chemotherapy where we have seen a remarkable response, Dr. Jennifer Mulbury a Pediatric Neurologist at the Golisano Childrens Hospital said.
Dr. Mulbury is also the Director of the Neurofibromatosis there.
She said the chemo will hopefully prevent Ryan from major vision loss, but she's hoping for something better - a cure.
We're trying to look at the gene and trying to predict what's going to happen and will be have treatment for all of the other things that develop with NF which we don't yet, Dr. Mulbury said.
Until that day, Ryan's mom said she is doing what she can to give her son the best quality of life.
What we're doing and any fundraiser's there are on Children's tumor foundation - this is my son's life and if I can do what I can to improve it, this is what I'm going to do, Lampman said.
The Children's Tumor Foundation is having a walk to raise awareness and money for research.
The event will be held this Sunday at 10:30am at Perinton Park.