A group of six swimmers is heading to Lake Muskoka this Saturday for a 30-kilometre relay-style swim to raise money and awareness for organ donation and Camp Kivita, a camp dedicated to children living with organ transplants and organ failure.
The organ donor swim will start in the Gravenhurst Wharf at 6:30 a.m. and end at Hanna Park in Port Carling between 3 and 5 p.m. on July 29. Organ transplantation is a life-saving treatment option that allows people to change their life-threatening illness for something more like a chronic illness, said Stacey Bar-Ziv, one of the directors and founders of Camp Kivita. People with transplants need immune-suppressing medications to protect their new organ, but the surgery preserves and transforms life for these patients.
“When you’re living with a life-threatening illness and you get an organ transplant, people say it’s the gift of life,” Bar-Ziv said. “It really is, because it allows our children to go from being really, really sick to being able to live and to do things like come to camp and participate in the Transplant Olympics and go back to school and live healthy lives.”
The creation of Camp Kivita
Bar-Ziv and her co-founders were working in the area of organ transplants at SickKids 16 years ago when they decided to put together a camp. Since camps existed for children with cancer, heart disease and other medical conditions, they thought it only made sense to offer camp for the kids affected by organ failure and transplantation, especially given their specific health needs.
“We all believe in camp,” she said. “We know that it has this ability to transform lives, and so does organ donation, and we thought it would be really beneficial for our kids to have a space where they could come together, share each other’s experiences [and] be with others who’ve had a similar healthcare journey.”
It became clear to them almost immediately that Camp Kivita was filling an important gap in the lives of their campers. The staff noticed a kinship among the kids as they compared scars and talked about their various treatments, but more than anything, they were all getting the chance to just be kids together.
The camp offers activities like archery, canoeing, sailing and other things that might not be possible without the health support offered at Camp Kivita. Many of the nurses and doctors at the camp have already contributed to the children’s treatment in hospital, so families can rest assured that their kids are in competent, and often familiar, care.
“We’re fortunate that we’ve been entrusted with our campers,” Bar-Ziv said. “We have a mailbox full of letters from our families who have expressed their gratitude knowing that their kids could go to a place that was safe for them and where they can just have so much fun.”
Camp Kivita partners with Camp Wenonah in Bracebridge for the use of their grounds. Their session, which will run from Aug. 27 to Sept. 7, typically hosts 70 campers, but they’ve upped their capacity to 100 campers this year. It’s the most campers they’ve ever had, so it means increasing their usual $150,000 fundraising goal.
From the beginning, they decided to offer the experience free for campers, both to lessen the load on families and to ensure that kids of all backgrounds could take part. Over their 15 years of operation, they’ve welcomed more than a thousand campers.
“If you have any question about whether donating an organ works, there’s no better depiction of the success of organ donation and transplantation than seeing our kids, our campers, out there living their best lives and enjoying camp,” Bar-Ziv said.
Swimming to spread awareness
Bar-Ziv volunteers her time alongside her fellow directors and said they wouldn’t be able to offer camp if it weren’t for the support of their many donors. She wants to thank the Jacobs family, who organizes the annual swim, for their ongoing support and commitment. Too many people spend too long waiting for organ transplants, and awareness is just one way to move toward a better future.
“We have children who languish on the list,” she said. “We don’t have enough donors to meet the need, so one of the really important things for people who work in the field of organ transplantation is to help spread awareness of the critical need for organ donation.”
Ricky Jacobs set out to do just that when he created the organ donation swim. He initially wanted to raise awareness on behalf of his father, Paul, who lived with polycystic kidney disease before his death from brain cancer in 2020.
Ricky’s mother had donated a kidney to Paul that allowed him to live free from dialysis, which cleans a person’s blood when their kidneys aren’t working properly, for about five years. Eventually, he contracted a strain of the measles virus that attacked his healthy kidney, putting him back on dialysis and the transplant list.
“When you’re in a position where you need a transplant, the methods to get one are primarily on the individual and their network of people they know because there’s no living donor registry in Canada,” Ricky said. “You can’t put your hand up and go, ‘Hey, I’ll get on the list.’ You have to go on the deceased donor list, which is a five- to seven-year waiting list.”
Based on advice from his doctors, Paul couldn’t wait that long. Ricky and his wife came up with the idea of creating the swim to raise awareness for organ donation and hopefully find his dad a kidney. On top of his family’s personal experience with organ donation, Ricky learned about the various issues with Canada’s transplant system.
Public surveys show that 90 per cent of Canadians support organ and tissue donation, but only about 32 per cent have registered as organ donors. Ricky and others in the organ donation community attribute that discrepancy to the opt-in systems that most of the country uses.
In January 2021, Nova Scotia became the first jurisdiction in North America to institute presumed consent, making all residents organ donors unless they opt out. The change aims to decrease waiting times and account for the people who support organ donation but simply forget to register.
“It would make a huge difference to reduce wait times,” Ricky said, “and I can tell you, it will save lives.”
A celebration of life and community
Through the early years of the organ donation swim, they found several people willing to donate their kidneys to Paul, but unfortunately, they weren’t compatible. There’s no way to know if a transplant would’ve changed the end of Paul’s story given his cancer diagnosis, but Ricky said a reduced waiting time could’ve taken away some of the stress of continually waiting for a call.
The swim was never meant to become a memorial event, but that’s what it transformed into after Paul’s death. Ricky sees it as a chance to celebrate his dad’s life as well as organ donation overall. One of the swimmers acted as a living donor and gave part of his liver to someone else, Ricky said, and two of the swimmers have been the recipients of liver transplants.
“I’ve heard our transplant recipient stories with the swimmers many times, and I can tell you that I tear up almost every time I hear it because they’re so grateful to have a second chance,” he said. “Life is an amazing thing, and we’re so fortunate, especially to be able to experience Muskoka because it’s one of the true treasures in the world.”
Ricky and his family were already longtime cottagers when they decided to start the swim, so Muskoka made the perfect backdrop for their event as a place already near and dear to their hearts. He grew up spending his summers in Muskoka, so he’s happy to be able to offer some of that same magic to the kids at Camp Kivita.
Support from the Muskoka community and beyond has also played a big role in the event over the years. Walkers Point Marina and Muskoka Extreme contribute boats and staff assistance alongside the kayakers who provide safe passage across the lake. Any support is appreciated, so they encourage people to boat out to them to say hi or cheer them on from afar as they complete the swim.
“The community in Muskoka has been so exceedingly helpful and supportive,” he said. “It’s a weekend that our family looks forward to because it’s a real celebration. As much as there’s serious issues that we’re talking about and we’re dealing with, it really is a celebration of the organ donation community and coming together to be connected for one issue.”
The six swimmers do the route relay-style to represent the organ donation process. In addition to the donor and recipient, it represents the friends, family and community that make up the organ donation experience. From Gravenhurst to Port Carling, they high-five between each leg of the swim, connecting the lake from one end to the other.
Organ donation: A crucial conversation
Over the eight years of the swim, Ricky and his team have raised over $85,000, sending between 45 and 50 kids to camp. This year, they’ve already reached their fundraising goal multiple times, and the current total is over $10,000 before the event.
All the proceeds go directly to sending as many kids to camp as possible. The team fundraises through the Kidney Foundation of Canada, so all donations are secure and free of administrative fees.
“We’re just a vessel to help facilitate that generosity to then extend that to the kids directly,” he said. “We’re just really proud and appreciative and super grateful that we can again play a small part in hopefully making kids feel like a kid like they should be feeling, especially during the summer.”
Ricky said they’re so proud of the community they’ve built around the swim, and they’re always looking to expand it. Along with gratitude for the generosity people have shown, he also wants people to remember that everyone can play a role in saving lives.
The five- to seven-year wait for people in need of transplants is often an agonizing one, both for the patient and the people around them. He urges people to have a conversation about organ donation with their loved ones.
“It’s a very personal choice, but we hope that more people have the conversation and choose to donate because it will make a massive difference to people who are waiting,” Ricky said. “There’s 1,600 people at any one time in Ontario waiting for an organ, and a lot of them won’t get it.”