DRACUT -- Justin Brace spends the majority of his day confined to a wheelchair. He can't speak, he can't swallow, and he requires a feeding tube and a ventilator to breathe.
That's really just the tip of the iceberg when it comes to Brace's physical limitations.
He lives in Dracut with his mother Joyce, who is her son's primary caregiver with the help of an at-home nurse. For Justin, long, difficult days are mainly highlighted by watching television and movies.
The 31-year-old former Dracut High hockey player (Class of 2001) was diagnosed with amyotrophic lateral sclerosis (ALS) on Sept. 15, 2005 at the scary-young age of 22.
ALS, commonly referred to as Lou Gehrig's Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
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Justin can think, see, feel and hear just fine. He also has the ability to smile, and lately he's been doing so on numerous occasions thanks to this summer's online phenomenon called the Ice Bucket Challenge.
By now, you've undoubtedly seen the videos -- you really can't miss them. For the last month, they've been all over Facebook, Twitter and TV. The challenge dares nominated participants to video record themselves dumping a bucket of ice water on their head to raise awareness and money for ALS.
Beverly's Pete Frates, a 29-year-old former Boston College baseball standout who has ALS, has been instrumental in popularizing the challenge through social media. Now, professional athletes, actors, musicians, politicians and people all over the world are getting in on the action.
"The awareness now is unbelievable. ALS always needed something big out there to help the cause. It has always been kind of taking a back seat," said Joyce. "Justin loves seeing these athletes do the Ice Bucket Challenge. He's a huge Bruins fan, and he smiles ear-to-ear when he sees a player do it. He becomes more hopeful every time he knows people are being made more aware."
Beating the odds
The average life expectancy of someone after an ALS diagnoses is two-to-five years. Justin is soon approaching Year 10. His mother says he still very much has the desire to live and keep fighting. While his physical capabilities have deteriorated, his mind remains sharp and optimistic.
"The Ice Bucket Challenge has been great. All it takes is one view to generate a million views," said Jack Brace, Justin's father, who lives in Hampton, N.H. "It's incredible that people have taken the time, accepted the challenge and are making donations. I get notes from the bank every day telling me another donation has been made."
It is estimated that 5,600 people in the U.S. are diagnosed with ALS each year, and that 30,000 Americans will have the disease at any given time. The Ice Bucket Challenge has done wonders for a disease that was severely lacking in public awareness and funding for treatment and research.
As of last Tuesday, the ALS Association had received $22.9 million in donations over the last three weeks. That's compared to $1.9 million during the same time period last year (July 29-August 19).
"It always sounds so hopeful, and you have no choice but to go with it," said Joyce. "Unfortunately, it's all about money. I think you have to be willing to do whatever it takes, and Justin at his age was and is willing to do that. He has always been an excellent patient, he is just not a complainer. He's a trooper."
Said Jack, "We didn't know what ALS was when Justin was diagnosed. If you ask the average person on the street what they know about ALS, it would probably be difficult for them to answer. When the disease impacts your family, you tend to want to educate people on it so they know what a patient is going through."
Justin is no longer able to use computerized technology to communicate. He raises his eyebrows to answer "yes" to a question, and closes his eyes to answer "no." Time-consuming preparations must be made if Justin is going to leave the house, and trips to the doctor have gotten more burdensome.
It is very rare for a person to be stricken with ALS at the young age of 22. People in the Dracut community have rallied around Justin and are doing what they can to help.
Thanks in large part to Dracut High hockey coach Mike Marshall, the program holds the annual "Ice ALS" tournament during the winter to raise money for the Justin Brace ALS Fund. Last Saturday, the fourth annual Justin Brace ALS Softball Tournament was held at Joker's Lounge in Dracut, also going towards the Justin Brace ALS Fund.
The softball tournament was a tremendous success. Ten teams (the most in the event's history) competed and $7,700 was raised, bringing the four-year total over $20,000. For the first time, Justin was able to attend. He watched the games and took photos with his friends and the teams involved, as players wore tournament T-shirts with the No. 18 -- Justin's jersey number at Dracut High -- on the back.
Stephen McLean, a 25-year-old former Dracut High student and hockey player, organized the softball tourney.
"Mike Marshall wanted us all to know Justin's story and shake his hand. He always told us that there are bigger things in life than being a high school athlete," said McLean. "Absolutely, the Ice Bucket Challenge was a spark for the tourney. People showed up in previous years, but I think a lot more people were willing to donate this year. It far exceeded our expectations."
Justin also continues to exceed expectations.
"When he sees all of this stuff on TV about life expectancy and things like that, you can see it in his face. I think he still has a sense that it's different for him," said Joyce. "I tend to just lean over to him and say 'Justin, you're still here. You are the one that's going to beat it.'"
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