EDGEWATER, Md. (WJLA) – Feb. 28 marks the 7th annual International Rare Disease Day.
On this day, hundreds of patient organizations worldwide are holding awareness-raising campaigns centered around this important slogan: “Alone we are rare. Together we are strong.”
A brave local boy is speaking out and exposing the realities of a condition you’ve probably never heard of.
Twelve-year-old Zach Brown of Anne Arundel County is far from your typical 7th-grader.
“I have a cavernous Angioma which is like a stroke, except for it's when a blood vessel in either your back or your brain explodes," he explained.
Zach got the troubling news two years ago after a stomachache, double vision, and difficulty hearing landed him in the hospital. The diagnosis forced the budding athlete off football and lacrosse fields for good.
“It made me paralyzed for a while in a wheelchair and then a lot of rehab," he said.
Despite making great strides, there have been serious setbacks. His brain stem bled not once, but twice. Zach had five eye surgeries and lost his most prized expression - his smile.
“I can't really smile with this side of my face," he pointed out.
"I have three happy kids, but I would love to have three healthy kids," she said as tears dripped down her face.
Tracy Brown is fighting to keep her son alive.
“As a parent, you do anything you can to help your kids," she said.
She and her son are raising awareness in hopes of closing in on a cure for the 25,000 people in the United States who suffer from this same disease.
“The reason I talk so much about angiomas to anyone that will listen is that there's very little funding for research and the only treatment currently is surgery, surgical removal, and he's not a candidate for that,” said Brown.
If her son has one more bleed in his brain, it could be catastrophic.
“It can be deadly,” she struggled to say. “That's a very big possibility."
A "possibility" that's not stopping Zach from having faith in a healthier future.
“With all the bad that it's got there's a lot of experiences that I would have never gotten," he said.
Click here for more information on cavernous Angioma or to help donate for a cure.