From the Heart
In his seven years of life, Evan Ty Jenkins had a huge impact on others. And his legacy continues today, helping children with cardiac disease live longer, fuller lives.
Born in 1999 with a rare form of congenital heart disease, Evan “was just an awesome little guy, so special. Everybody loved him. He was just a little sweetie,” says his maternal grandmother, Charlene Jenkins. She is the president of the Evan Ty Jenkins Pediatric Research Foundation, operating as Treasure Life, a nonprofit organization based in Beaumont. Through its partnership with the Stollery Children’s Hospital Foundation, Treasure Life funds state-of-the-art diagnostic equipment and programs for young heart patients at the Stollery Children’s Hospital in Edmonton.
When Evan was diagnosed at birth with hypoplastic left heart syndrome, “We knew he was going to have a tough time,” recalls Charlene, whose first daughter, Kristi, died from a similar condition in 1977, “He had a very complex condition with a number of different heart conditions that would have made it very difficult for him to continue without some type of surgical intervention.”
After three years of monitoring by physicians, Evan had two open heart surgeries, which prolonged his life. After the second, he was placed on a list for a heart transplant but “as fast as time goes, we didn’t have enough time,” Charlene says.
Evan didn’t want to be thought of as different. When a doctor introduced Evan to medical students by saying, “This is Evan. His heart is on the wrong side of the body,” Evan’s grandfather Rick Jenkins said, “No, his heart is on the right side of his body.”
“Evan went through all the procedures and medical challenges with such courage and was just such an inspiration to everyone,” Charlene recalls. He was a charmer. He knew all his doctors. He was his own advocate for his health care, she notes.
“Evan was just like any other little boy. He might have taken more medicine but he still went to school and had his buddies like everybody else. He tried every sport the other kids were doing – T-ball, soccer and more.”
After his passing, Evan’s family was determined to help others while keeping his memory alive. “Those types of tragedies bring you together to really reflect on what happened,” Charlene says. "You can either be sad or put it away, or you can put it into something positive. We wanted to be part of cutting-edge technologies that really help kids with cardiac conditions, and we wanted to make sure the programs that we already endorsed stayed funded.
Evan’s grandparents – Charlene and Rick Jenkins, and Judy Chapman and Bill McLaughlin – together with Evan’s mother, Shauna – established Treasure Life, to “treasure cardiac children and support their journey through research, education and stroke prevention.”
Overseen by a dedicated seven-member volunteer board, Treasure Life now extends far beyond Evan’s family.
With the help of its donors and sponsors, Treasure Life is impacting the lives of children and their families; since inception it has given approximately $300,000 to the Stollery Children’s Hospital Foundation. And the need is great. According to the Heart and Stroke Foundation of Canada, one out of every 100 children is born with some form of heart defect, with half of those affected children requiring surgery to survive.
Treasure Life recently made an $80,000 donation to purchase a portable echocardiogram for use at outreach clinics across Alberta. This advanced diagnostic technology allows cardiologists to look inside the heart using full-colour-4-D imaging and make an instant diagnosis. “It’s brand new cutting-edge technology that makes diagnosis so much easier. We are really proud of that donation,” Charlene says.
Treasure Life has only pledged $20,000 annually toward research and the purchase of a variety of monitoring tools, including oximeters, to measure blood oxygen levels; a portable machine to measure blood thickness; and stethoscopes – so that children can return home sooner from hospital. “We want to find this equipment and get these kids home, which is where they want to be,” Charlene says.
Additionally, Treasure Life has give $18,000 to Make-A-Wish Northern Alberta to send cardiac children on a trip of their dreams.
Evan’s legacy also encompasses the Treasure Bead Program, an ongoing program at the Stollery Children’s Hospital. Youngsters receiving treatment at the Stollery receive one bead for each medical procedure they undergo, and the bead is placed on a cord that becomes their “treasure chain.” “These kids are proud of those chains – it’s their journey.”
Treasure Life raises money for the Stollery Children’s Hospital Foundation through fundraising events that include the annual Treasure Life Golf Classic, an annual stake-a-thon called Skate for Cardiac Kids, a casino and a variety of other events and initiatives.
“We are inspired by our ability to be able to fund innovative technologies through this valuable partnership with the Stollery. Our mission fits perfectly with their long-term objectives to pursue excellence in children’s health care,” Charlene says.
Published Fall of 2015, Stollery Children’s Hospital Foundation