FERNANDINA BEACH, Fla. — It's a disease that could kill her, but a local woman hopes that same disease, will lead to a cure for thousands of people. Neurofibromatosis or NF, is a disease that Michele Holbrook of Fernandina Beach has lived with for more than 20 years.
This year, she's joined a team that will row more than 350 miles through the Atlantic Ocean from Miami back to Fernandina Beach to raise awareness and money for a cure for NF. Money, that would help 6-year-old Allie Kate Rutland.
You'd never know by looking at the little girl, but Allie Kate is battling a serious disease.
"When we found out that Allie Kate was diagnosed with NF, my whole world shattered," said Ashley Rutland, Allie Kate's mom.
Allie Kate is an adventurous 6-year-old who likes to play with her friends; she also has ongoing health problems.
"Right now, she has a right optic pathway glioma," said Rutland. "We actually had her eye exam this week and they said she has lisch nodules on her eye, so we're going to have to keep our eye on that."
Allie Kate was diagnosed with neurofibromatosis just three months after she was born.
"We do MRIs every six months to a year just to see if the tumor is growing and if it does grow in size at any point," said Rutland. "It's on her optic nerve and we're going to have to do chemo for a year to see if we can shrink it because it could take her vision," said Rutland.
Allie Kate is just one of the many people with NF that Michele Holbrook hopes to help with the money and awareness she'll raise by rowing the boat, 'Courageous' with three other people through the Atlantic Ocean from Miami to Fernandina Beach this fall.
"What she's going to have to live her life enduring, as well as her parents going through the stress and anxiety of trying to help their child, that's what it's all about for me," said Holbrook. "It's not about me, it's about the younger generation that has to live with this horrendous disease."
"Her dad and I are so thankful for people like Michele in our lives that are so passionate about this disease and finding a cure, because one day we are going to find a cure," said Rutland.
And then Allie Kate can focus on the important things in life, like just being a kid.
More information about Michele Holbrook's row and the Children's Tumor Foundation can be found here.
The boat, 'Courageous' is also making an open ocean row from California to Hawaii during the month of June, more information about that journey can be found here.