Ben Cambria is an outgoing, rap loving, college junior who loves to hang out with his blue-nosed pitbull, travel, play soccer, and is working towards graduating from the University of Albany, where he's an event coordinator at his fraternity.
A lot of those loves became more difficult or even close to impossible when he was diagnosed with ALS in July 2016.
"It's a devastating diagnosis," said Ben's mother, Becky Cambria. "There are stages that you go through, the first being denial. He wants to continue doing what he wants to do, he just has to do it differently. ... But he never complains. We've had to modify our home. Not sure if we're going to move, or put an addition on, so we're feeling our way right now."
Ben and his twin brother are the middle children of the six-kid Cambria family. He played soccer at St. Joseph's Collegiate Institute and Kenmore West, and began playing club soccer at the Albany before a diagnosis changed his life.
"He played soccer in Albany a little bit but got injured," said Becky Cambria. "We really weren't connecting the dots. His freshman year he was having stiffness in his hands and feet, and he would go to the clinic people would say it's stress from the exams or school. And when we picked him up, I was like 'What the heck? This is more than stiffness.'"
It was Amyotrophic Lateral Sclerosis (ALS), often referred to as Lou Gehrig's Disease.
In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to twitch (called fasciculations), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements.
Ben was fortunate enough to earn a trial of the first ALS drug trial in almost 20 years, his mother says, and this has him getting infusions every day for 2 weeks, followed by 2 weeks off before restarting the cycle. The treatment won't cure him, but could dramatically slow the disease's progression.
"He's been getting the infusions since August," Becky Cambria said. "It's too early to tell if there have been any changes. Fifty percent of people living with ALS die in the first two years. Ninety-eight percent die because they refuse the trache.
"We have a very strong faith life and our prayers are just that Ben is a beacon with this new drug and it will slow down this disease that he will accomplish what he wants to accomplish."
An ALS diagnosis is a lot to handle, and life has handed the 19-year-old a lot: Handling a grueling disease with a challenging new treatment and the rigors of fighting for a degree.
"He his good days and his bad days," Becky Cambria said. "Depression certainly plays a role with the diagnosis. Not being able to do things his peers can do easily can cause him to have very down days. Everybody just tries their best to be positive and encourage him that he can still do what he wants to do."
A portion of the proceeds from every 26 Shirts Volume 5, Shirt 13 design "Laser Swords" goes to help Ben and his family combat ALS.