Hometown: Streamwood, Illinois
Involvement with HFGF: Two years
Natalie Rubin (pictured above right with her mother Deborah Rubin) is fresh off of her first week at Camp Boggy Creek as a leader in training, working with young cancer patients. A former camper at the Hemophilia Foundation of Greater Florida’s Camp Spirit at Boggy Creek, it’s where Natalie finds solace.
“It is really rewarding,” she says, adding that she learned about the Foundation and the camp from her doctor, who recommended she get involved. “I have always wanted to make change for the better.”
A rising senior, the 17-year–old Tampa resident has an aura about her, a maturity beyond her years. Not only is Natalie dealing with a bleeding disorder, she also suffers from Ehlers Danlos syndrome, a connective tissue disorder that brings with it illness on a regular basis.
“I get sick a lot, and I miss a quarter of each school year,” she says. “At first, the school just thought I was an attention-seeking kid.”
Diagnosed at age 12 with type one Von Willebrand Disease, Natalie is the sole member in her immediate family, which includes two sisters and a brother, with a bleeding disorder. On the bright side, she does not need to infuse on a regular basis.
“With me, it’s mostly precautionary, like no contact sports,” she says. “I did need an infusion when I had shoulder surgery. And I had to take stimate for a wisdom tooth to be removed.”
She laughs when mentioning the dentist, because during regular checkups, her gums may bleed a bit more than other patients. “It’s not because I don’t floss!” she declares.
It is that laugh and upbeat attitude that defines Natalie these days. There was a time she felt a tad cheated, but that’s behind her now.
“When I was first diagnosed, I felt that way, but now I believe everything happens for a reason,” she says. “I am still living a very full life and hoping for better things to come. If I spent all of my time being sad, I would be sad all the time. A lot of that came from being a camper at Camp Spirit. They teach you to concentrate on all the things you can do. The only limitation is gravity.”
Beyond helping others, another thing Natalie can do well is play music, whether she is jamming on her tenor saxophone with the high school marching band or playing bass clarinet in the concert band. Following high school and college, it’s no surprise that Natalie has set her sights on making the world a better place, whether that’s becoming a geneticist or working at a camp for kids.
“That’s when I am happiest,” she says about the camp setting. “And they say if you are happy with your work, you’re not really working.”
That’s Natalie for you, mature—and wise—well beyond her years.