Evelyn and Lawrence Pontbriant are the kind of couple who finish each other's sentences. They've been through the best of times and the worst over the last 25 years. They met as nuclear medical technicians while working at Holyoke Hospital in Massachusetts in the early 1980s and moved to Norwich, married, and had one son, Larry.
Larry became the center of their world. Evelyn left her position as a nuclear medicine technician at the William W. Backus Hospital so she could become a stay-at-home mother when he entered kindergarten. This enabled her to bring him to all his extra-curricular activities, which included many extra classes, a 4-H camp, and sporting events. He played soccer for Norwich youth leagues and NFA, ran cross-country at Kelly Middle School, and was on the Norwich Free Academy (NFA) Indoor Track Team. These sports helped him stay in shape to play on the Southeast Select (regional team with a college coach) and NFA Lacrosse Teams.
She'll tell you her son was charismatic with a sweet smile and twinkling eyes. Photographs of him show this as well. He also had plenty of buddies and girls loved Larry — and those curls. They weren't happy when he cut his hair really short for the summer, she remembered.
Larry was nicknamed "Superman" by friends for being a "regular kid with extraordinary character," she said.
"He was a bright kid. He was popular. He had a good heart and a good soul … He really had it all."
No one could have known that Larry, who had thoughts of becoming a sports medicine doctor, would bring so much attention to other athletes' health and the importance of AEDs through his untimely death.
In 2007, Larry was 15 and had finished his freshman year at NFA. On Aug. 16, he was competing in a Mohegan Striders Fun Run at Mohegan Park in Norwich – an event he entered to help him prepare for the fall soccer season.
About halfway through the three-mile-trek, Larry collapsed. His parents, who were first at the scene, began doing cardiopulmonary resuscitation (CPR). Realizing that Larry was probably experiencing sudden cardiac arrest (SCA), NFA Cross-Country Coach Chad Johnson quickly moved them out of the way and continued doing CPR. "He was right, and the only way to reverse the SCA is with the shock of a defibrillator," Evelyn said.
"With SCA, the heart isn't damaged. The signals have just stopped, so if you're able to get a signal, you will be able to save that life," she explained.
Without an automated external defibrillator (AED), Johnson continued CPR until the ambulance came. "Once the EMTs got there with the AED, they were able to restart his heart, but it had been too long," said Lawrence. More than 20 minutes had passed.
In the back of her mind, Evelyn said she kept thinking about the fact that if your brain is without oxygen for four to six minutes, it can begin to swell. "And once it starts, apparently it doesn't reverse," she said.
Larry was taken to the William W. Backus Hospital in Norwich and later to Connecticut Children's Medical Center in Hartford, where he died three days later, on Aug. 19.
Awareness and hope
Doctors never pinpointed why Larry's heart suddenly went into SCA.
"It could be any one of a number of reasons. The major thing that causes cardiac arrest in young athletes, is hypertrophic cardiomyopathy, which is a thickening of a portion of the muscle of the heart. It is the leading cause of death in young athletes and usually goes undetected unless an autopsy is done. It causes disruption of the electrical function of the heart leading to SCA," Evelyn explained.
Immediately after Larry's death, money started pouring in and The Larry Pontbriant Athletic Safety Fund was created. People just wanted to do something, Evelyn said, because they knew that Larry was healthy and fit, and that this could happen to any child. The fund is managed by the Community Foundation of Southeastern Connecticut, which serves 42 towns in the region.
"The whole idea behind Larry's fund was to provide AEDs to schools and athletic fields, and to raise awareness about Sudden Cardiac Arrest," Evelyn said. The devices cost between $1,200 and $2,000.
SCA is different from a heart attack. A heart attack is more of a 'plumbing problem,' Evelyn said, with a blockage, sometimes with shortness of breath, or pain in the chest or arm, or other issues.
"If the blockage becomes so prominent that it ends up affecting the blood flow in the heart, it can cause the heart to go into cardiac arrest. Now it becomes an electrical problem ... and the heart could just be quivering. When it gets to that point, unless you do something about it, that person will die. And you only have ideally about three to four minutes," she added.
As of January, 86 AEDs have been donated to schools and organizations in eastern Connecticut.
Finding their voice
Along with many others in 2009, Evelyn testified at the state capitol about her personal experiences around Larry's death, while two bills concerning the use of AEDs were being discussed.
"Evy did the speaking. I was holding up the picture of Larry," Lawrence said.
Looking back, the Pontbriants said they were not in a "good mental state."
"Basically, people just picked us up and moved us in the proper direction," said Lawrence, referring to those who were working toward reform at the time, including former state Sen. Edith Prague; former state Rep. Christopher Coutu; William W. Backus Hospital and American Ambulance staff; as well as representatives from the American Heart Association and the Athletic Trainers' Association.
The bills later passed. One dealt with expanding the Good Samaritan Protection Bill, so that under most circumstances,
a rescuer would not be open to civil damages for injuries that occured during the use of an AED. If the device was not maintained by the current owner, that person could be held liable. The bill also cleared AED donors of liability for continued maintenance of the devices.
The other bill focused on AEDs in schools, allowing them to be available in schools during and after school hours as of July 1, 2010, providing there was federal, state, or private funding available to pay for the devices, and a formal emergency response plan.
"What ends up paralyzing a lot of people is they don't want to get sued," Evelyn said. "These devices are set up so you don't even need to be trained in using them. We highly recommend that people take a CPR course — which would include using an AED — but the beauty of the device is you do not need to be trained in using an AED."
Lawrence emphasized that AEDs must be clearly marked and accessible, not locked up in an office. And instead of each state crafting its own legistlation regarding CPR and AEDs, the Pontbriants believe there should be national, consistent regulations, similar to those for fire extinguishers.
After advocating on the national level through The American Heart Association, Lawrence said the couple realized they wanted to focus on their community.
"You can actually have local impact. That made us feel better than trying to go these meetings where it was all strategy. It just wasn't us," he said.
A memorable run
One of Larry's good friends, Evan French, 23, was visiting the Pontbriants' home the day they were interviewed for this story. His memories of Larry go way back to third grade when they would gather toys at the Pontbriants' house and reenact battles outside, as well as play paintball, and go kayaking and water rafting. "There were four of us that all hung out together every weekend and every day after school too, once we got cars," Evan said.
While at Moriarty School, they wrote a school play based on the Harry Potter books. Evelyn made the wands and she and other parents painted backdrops and created scenery, cars, and mandrakes for the play.
"We were always getting rides with her," Evan said, smiling at the memory.
He graduated from the University of New Haven and now works as an analyst at a pharmaceutical company. He said his friend, Tom Teixeria, an NFA Project Outreach volunteer, first thought of a 5K memorial spring run in Larry's honor. The annual event will be held this year on Sunday, May 18, from Norwich Free Academy. Registration is at 11 a.m. and the run and children's runs start at noon.
"Tom and I always run it together and we're like, 'Who thought of this course?'" Evan said, laughing. "And the people around us will be, like, swearing. More than half of it is uphill and then there's a short downhill and the finish is actually uphill too. We were in great shape when we did it, but now after four years of college …"
Evan and the other organizers thought the race would be a one-time event. Back then, he said most people didn't even know what an AED was. As the years have passed, and more people learned about Larry and the deaths of others around the state, more people are aware of their importance, he said.
"A lot of squad cars now carry them. Now, you see them in every lobby and school. It's almost like a collective effort," Evan explained. The first race raised about $2,500 with about 250 runners, and doubled the next year with 500 runners, and then doubled again. Each year, local organizations and companies, including Ace Hardware, Shop Rite, and Stop & Shop, donate water, bananas and prizes.
The Pontbriants always attend, bringing educational signs and literature, and donating lanyards, wrist bands, racing stickers, and prizes.
Living with loss
Larry's death left a huge void in their lives, Evelyn said.
But she said the couple is grateful that they have not endured the pain alone. NFA athletes arrived at the funeral in team jerseys to show their support. Friends and neighbors made food and organized the funeral reception at St. Patrick's Cathedral Hall, which was filled to capacity after the service, during which classmates played a slide show. While the Pontbriants mourned at home, people stayed with them overnight.
And they take comfort in the fact that Larry lives on through the numerous people who benefited from his organ and tissue donations, including his heart valve, liver, lungs, kidneys, and corneas.
As part of their continuing healing process, the Pontbriants attended classes at My Dog's Place in Mystic and Niantic and taught their Cockapoo dog, Maggie, search-and-rescue techniques. The classes continue to a lesser degree as a form of play, since Maggie had back surgery. Lawrence has also taught himself how to barbeque and make wine.
"We needed to reinvent ourselves," Evelyn said.
Additionally, they connect with others through "Parent Heart Watch," a national advocacy organization made up of parents, families, friends, and survivors dedicated to reducing SCA in youths.
Another current fundraiser is the Pontbriants' family cookbook, in its second printing. It is filled with main entrees, side dishes, soups, salads, desserts, appetizers and beverages — many of which Larry enjoyed.
Future fundraising plans for Lawrence include donating the profit from a variety of his homecrafted wines, named "No. 29" after Larry's NFA lacrosse number; developing his own barbecue products; and starting a catering business.
To learn more about the fund visit www.lpasf.org. To read a breakdown of AED laws by state, visit the Centers for Health and Public Safety website, www.lifesavingresources.org. A limited number of The Larry Pontbriant Athletic Safety Fund Cookbooks are available for $15 (which includes shipping and handling). They can be ordered by sending an email to firstname.lastname@example.org. Checks should be made payable to "The Larry Pontbriant Athletic Safety Fund" or "LPAS."