FERNANDINA BEACH, Fla. -- Walking down the street, you can't tell Michele Holbrook has anything wrong with her. Though the Fernandina Beach realtor looks healthy, she said looks can be deceiving.
"I have tumors throughout my body," she said. "I have three in my brain, eight in my spine, all in my abdomen. I have them in my liver. I have them in my sciatic, and I have them in my pelvis. When they start growing they either have to do radiation or have surgery to remove them. I have had five surgeries. Three were last year."
Michele first starting having problems when she was 25, but it wasn't until she was 30 years old when she was diagnosed.
An MRI revealed she had a tumor. The neurosurgeon told her she had Schwannomatosis, a type of neurofibromatosis better known as NF, which causes tumors to form on nerve tissue. They have a 1 percent chance of being malignant. Her tumors are all benign.
"They say the older you get the more they develop, unfortunately," Michele said. "When I first started this journey I had one. Now I have probably, 28. Unfortunately I have some on my liver that are inoperable that if they grow it could kill me."
Now 51 years old, the t-shirt she is wearing says it all: "Born a Fighter." She credits her family and friends with helping her fight.
"You have to be a fighter and that's what I am," she said. "It's a tough disease. Not for me but for the children. You have to look at the kids who have this. My children and grandchildren and the others who don't know what's going on with this disease. As much as I can I try to be an advocate for them."
NF is an incurable genetic disorder.
"We think my dad has it," she said. "He's never been tested for it. He has the lesions on the back. We think my grandmother might have had it. She had a tumor on her brain, but back then they didn't know what this is."
Michele didn't find out she had it until after she gave birth to her son, who is now in his 20s.
"You always think, does my child have it? He was the only one I could have," she said. "After we had him we found out I had this disease or condition and I couldn't have any more children. When you sit in the office with a neurologist and he says, we think your son has NF, that breaks your heart. It pulls at your heart strings, I didn't want him to have to go through what I've gone through."
It's a condition that can cause debilitating chronic pain depending on where the tumors are located.
"They are all on your nerve endings," Michele said. "The two I had on my lung, I was in excruciating pain. There were days I just wanted to cry. I went to the doctor the other day just to do the scans on the pelvis and the sciatic and I have one on the groin area of my leg, and she said well we could remove it, but it might cause your leg not to work."
For Michele, who loves to run, that's not an option.
Earlier this year after going through radiation she completed Project Athena in Santa Barbara, California. It's a grueling, 24-hour 77-mile challenge designed to help those with serious medical conditions overcome their fears.
"Just to know I've got this and I can do this," she said. "It really made me realize as a person you know what if I can do this for Project Athena guess what, I'm going to fight like this for the Children's Tumor Foundation and that's when I said, this is my mission. This is this what I'm going to fight for."
For Michele, she's in it for the long run with one end in sight: to end NF. The thought of finding a cure brings years to her eyes.
"To know that I'm okay," Michele said. "To know that I'm going to going to be able to number one not hurt every day. The second thing is to know that my my child is okay. To hopefully know if my granddaughter has it to know that she's okay. There will be a cure. We will find it."
Michele is helping to organize a Casino Royale fundraiser. It will take place December 8 at 6 p.m. at Amelia Island Plantation Walkers Landing. All the proceeds will go to the Children's Tumor Foundation to help find a cure. You can learn more about the fundraiser by clicking here.
There are three types of NF. According to the Mayo Clinic, having more than six flat, light brown spots on the skin known cafe au lait spots is a strong indication of NF1. You can read more about the signs and symptoms of NF here.