Earlier this week, Wagner University posted a video of assistant men’s basketball coach Mike Babul, a former UMass forward, doing the Ice Bucket Challenge.
Someone involved in sports taking part is hardly noteworthy right now. The internet is overflowing with videos of people, some famous, some anonymous, dumping ice water over their head to help raise awareness for ALS. It’s the trendiest charity fad since yellow silicon Livestrong bracelets.
It’s much more personal to Babul.
Fourteen months ago, like most people Babul didn’t know much about the ALS. He knew it was fatal and that it killed Lou Gehrig. He didn’t even know what the acronym stood for — amyotrophic lateral sclerosis.
But now he’s all too aware. Just over a year ago, his mother Joan, 63, was diagnosed with the terminal disease.
When she started noticing diminishing strength in her left triceps in early 2013, ALS never occurred to anyone in her family.
“We used to tease her telling her ‘You have to hit the gym.’ Little did we know it was the beginning signs of ALS,” Mike Babul said. “It progressed into her upper arm. She noticed some atrophy in her triceps area. She went to rehab for five or six months and nothing got better. My sister-in-law who lives down in Atlanta is a nurse. She said we have to get Joan in to see a neurologist.”
There’s no definitive test to diagnose ALS, which is “a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost,” according to the ALS Association web site.
Doctors run tests to rule out diseases with similar symptoms before determining that a patient has ALS. The Babuls held out hope that one of those tests for less serious conditions would come back positive.
“I’ll never forget it. I was in Orlando, Florida at an AAU event,” said Babul, who grew up in North Attleboro. “It was a Friday afternoon and I knew she was going in for an appointment. My twin brother Jon went to the hospital with her in Atlanta and he called me. I was sitting courtside and he said ‘It’s our family’s worst nightmare. It’s ALS.”
Babul began to immediately learn all he could about the disease, researching what his mom was likely to face and what options there were for fighting it. He’s searched daily for the start of new clinical trials. Because ALS is so rare and so unknown, he’d almost never learn or even hear anything about it, except when he was doing his own research.
But the exploding popularity of the Ice Bucket Challenge brought the disease into everyone’s consciousness. The challenge, which was started in July by former Boston College baseball player Peter Frates, urges people to either donate $100 to ALS research or take video of themselves dumping a bucket of ice water over their head. Many participants dump the ice and donate to the cause as well. All taking part are encouraged to challenge three other people to take the challenge.
Many professional athletes, celebrities and politicians, including Michael Jordan and George W. Bush, have taken part. From July 29th until Wednesday, $31.5 million had been donated to the ALS Association, much of which had come from 637,527 people, who had never donated to the foundation before. During the same time period in 2013, less than $2 million had been donated.
Babul was moved by the surge in support.
“For a year, I go to work every day knowing my mom is dying, but unless I’m searching for it, I don’t see or hear anything about ALS treatments,” he said. “All of a sudden this past week, it’s everywhere you look, whether it’s a newspaper or Twitter, which has been great for ALS awareness. It’s generated millions of dollars. Hopefully some of the people will do some research to see what the disease is all about.”
In the 13 months since her diagnosis, Joan Babul has lost almost all of the use of her left arm and all but about 20 percent of the strength in her right arm, but has dodged some of the worse symptoms.
“My mom is fortunate. For some people it starts at the mouth which affects chewing and swallowing. Some people can’t eat and have to be fed through a tube. Fortunately for my mom, she eats fine and talks fine,” said Babul, who acknowledged that darker days could be coming soon. “The next area that it’s hitting is her lungs. The scary thing for me is that her lung capacity went from 85-90 percent when she was first diagnosed. Now she’s operating at 65 percent. When your lungs shut down you have to be on a ventilator.”
He’s clinging to the hope that the disease slows down.
“Every case is different. Some cases are so progressive that they die within a year,” Babul said. “Some people will live for 15 years. Some cases, someone will have it for 2 or 3 years and it will stall out and go away for a couple of years. I just pray that she has one of the cases that stalls out.”
For now, he’s just looking for any way to improve her situation.
“For the last year, I’ve been dialed into this disease, doing research on a cure or a clinical trial. Anything that will help my mom,” he said. “There’s nothing I can do but call her every morning on my way to work and call her every night on my way home and talk to her and give her a pep talk. As her son, I just want to make her proud.”