Last June Ancaster native Ray Jonasson was preparing for his own funeral. This month, he’s getting ready for the race of a lifetime.
Jonasson, 55, doesn’t expect to lead the way in next month’s Ancaster Mill Race. The simple fact he’s running is a miracle in itself.
When Jonasson last tackled the five-kilometre Old Mill Race back in 1996, he was a seasoned masters runner. Just three days earlier he had won a road race in Stoney Creek. He planned to finish in the top-five of the Old Mill Race, garnering a gift certificate to the Old Mill restaurant for an elegant dinner with his fiancée.
But during the closing stages of the race, something went noticeably wrong. Jonasson, then 39, felt an overwhelming sense of fatigue as he staggered from side to side down the final stretch. Conceding ground to the other runners, Jonasson crossed the line in seventh place. He collapsed on a mound of grass in front of the Ancaster Rotary Centre as his worried fiancée rushed to his aid. Paramedics were quickly on the scene. They checked his vital signs such as blood pressure and heart rate.
Everything appeared normal.
Jonasson chalked it up to a sudden case of the flu.
A blood test later confirmed a diagnosis of liver disease. Known as primary sclerosing cholangitis or PSC, the disease causes inflammation and narrowing of the bile ducts inside and outside the liver.
In layman’s terms, the organ’s passageways were becoming blocked, like a clogged filter. A liver transplant was the only cure, but there was no guarantee that Jonasson would even make the transplant list, let alone receive a new liver.
He expected to be put on the transplant list in three to five years. More than a decade passed.
Jonasson put his life on hold, waiting just to be placed on the list.
The uncertainty took its toll on a professional, personal and financial level. His international trade consulting business provided an exciting opportunity to relocate to South America. But Jonasson, now a Kitchener resident, was forced to decline the offer because it was too far away from a transplant centre. His medical condition dictated what jobs he could accept. His marriage suffered as well. He knew that each year, his likelihood of death increased by 1.5 per cent.
There was just one thing keeping him going.
His daughter Elizabeth would be graduating from university.
“I decided I was going to be around for my daughter and whatever sacrifices I needed were done,” said Jonasson.
Like the 1996 Old Mill Race, where Jonasson simply willed himself across the finish line, gasping for air, his quest for life carried him forward.
Although he was clearly sick, Jonasson still wasn’t considered sick enough to be placed on the transplant list.
Then in late-2008, a liver infection struck. Jonasson needed a transplant as soon as possible. He was put on the list, but a transplant was still years away.
Jonasson has a small photo album documenting milestones in his amateur running career and his fight against liver disease.
In 1991 he ran his first marathon. In 1994 he finished in the top-80 at the Toronto Marathon. As the years pass by, the stress begins to show on Jonasson’s body. By early 2011, his face is yellowed and puffy. There is no photo to celebrate his birthday on June 13, 2011. He is in such rough shape on that day, that his family doesn’t wish to document the moment.
One month later, Jonasson finally received the call he’d been waiting for. His bag was already packed, and an email was already prepared, ready to hit “send”.
He was whisked away to a hospital in London, Ont. He received his transplant and underwent a 10-day recovery period in hospital. All signs pointed to success. He now celebrates a second birthday on July 14. In more recent photos, his skin has returned to a healthy colour.
Jonasson wears an incision across his stomach like a badge of honour.
“This proves I’m alive,” he said, pointing to the mark without lifting his shirt.
When time came time to return home from hospital, his chauffer was none other than his daughter Elizabeth.
Despite waiting for the better part of two decades, Jonasson is grateful for the gift of life he received. Today he advocates on behalf of Life Donation Awareness, a network of local community volunteers who raise awareness of organ and tissue donation. The organization estimates that every three days someone in Ontario dies waiting for a life-saving transplant. There are currently about 1,500 people waiting for a transplant in Ontario.
Jonasson has never discovered his organ donor’s identity and likely never will. Strict privacy rules prevent him from knowing. To thank his donor, Jonasson encourages others to register online.
At next month’s Ancaster Mill Race, Jonasson plans to assemble a team of volunteers who will encourage people to sign up as organ donors. To register, log onto www.beadonor.ca with your OHIP card ready.
If you haven’t shared your wishes about organ donation with your family, Jonasson urges you to start the conversation.
Jonasson’s story has inspired Ancaster Mill Race director Peter McCluskey who has registered as an organ donor.
“It’s such an amazing story,” said McCluskey, who is preparing to welcome about 1,500 runners to the children’s one-kilometre, five-kilometre and 10-kilometre races.
Jonasson has just one spot left in his photo album. He’ll fill it with a shot of himself crossing the finish line on June 5.
Thursday, May 23, 2013 at 01:32PM 
