Barbara and Martin gathered family and friends to raise funds for a new Pulmonary Fibrosis Research Award
by Allan MacDonald and Sara Turcotte; photography by Paul Joseph
When Barbara and Martin met in 2010, both had been through a lot. Martin had recently lost his wife to breast cancer and was the primary caregiver to his eldest son, who had been born with cerebral palsy. Barbara was also a widow and, since childhood, had suffered from some minor lung problems, culminating a few years ago with an official diagnosis of pulmonary fibrosis.
The causes of pulmonary fibrosis (PF) remain unknown; but not its effects. “What we do know,” says Barbara, 66, “is that PF affects your breathing, gets progressively worse, and is always fatal.”
In the fall of 2014, Barbara’s condition took a turn for the worse and she was told that, without a lung transplant, she would likely not live beyond two more years, give or take. In October 2015, Barbara was placed on the transplant list. However, there was no guarantee if or when she would receive new lungs. If her name made it to the top of the list and a match was found, she must be fit enough to undergo the surgery and intense recovery.
Having been active her whole life, most recently as an avid cyclist, it was a tough shift for Barbara when she had to downgrade her activity and eventually stop cycling. During this time, Barbara began her first round of physiotherapy in the St. Paul’s Pulmonary Rehabilitation Clinic.
“Barbara puts in such hard work when she attends pulmonary rehab; she is fully committed and gives it 100 per cent. Her determination and commitment is amazing,” says Shelly Heneghan, Barbara’s physiotherapist.
It was encouragement from her friends at rehab, combined with all the unknowns—what causes PF, why it can take years to diagnose, why people don’t seem to know about it despite its impact (in Canada, PF takes as many lives as breast cancer)—that motivated Barbara and Martin to take action. They reached out to St. Paul’s respirologist Dr. Chris Ryerson.
“I’m Dr. Ryerson’s most willing guinea pig,” says Barbara with a smile, and she has reason to smile. Barbara has participated in four separate studies by Ryerson that helped her significantly.
Under Ryerson’s care Barbara was, for a time, able to return to her beloved physical pursuits, including a 20-plus-kilometre bike ride undertaken with a portable oxygen concentrator strapped to the back of her bike.
Fundraising for St. Paul’s
As part of their journey, Barbara and Martin have learned that even major institutions like St. Paul’s encounter challenges when it comes to funding.
“St. Paul’s has one of the world’s leading centres of research in pulmonary fibrosis,” says Barbara, “but even at St. Paul’s, funding is sadly lacking. Martin and I are committed to helping them in their work.”
There are many ways to help St. Paul’s—by volunteering time or donating to a fundraising campaign or event. But Barbara and Martin knew they wanted to do something more personal. After doing some research and connecting with St. Paul’s Foundation, they decided the best way forward was to host their own event, supported by the Foundation, guaranteeing that every dollar raised would go toward their newly created Pulmonary Fibrosis Research Award.
On November 21, 2015, the couple hosted more than 60 of their family and friends for a delightful evening of food, entertainment and education. Ryerson, Shelly Heneghan and several other St. Paul’s staff attended the event and were happy to share with guests what research would be made possible by their donations. Local musician Darcy Murdoch, himself a double lung transplant recipient, sang two sets of popular songs over the course of the evening.
When all was said and done, Barbara and Martin raised more than $50,000 through their fundraising efforts, all in support of pulmonary fibrosis research at St. Paul’s.
“In addition to all of their help and support, something we really appreciated about St. Paul’s Foundation was that we were able to request where our funds went, which isn’t always the case when it comes to making donations,” says Martin. “We wanted to support Dr. Ryerson and his PF work specifically and they said, ‘Sure thing.’ That meant a lot to us!”
A new beginning
Their fundraising goals accomplished, and more than a year after beginning the process of being placed on the transplant list, Barbara and Martin received the news they had been waiting for—Barbara’s name was at the top of the list and they had found a match. On February 19, 2016, Barbara underwent a successful double lung transplant and is now on the road to recovery.
When recently asked about their journey to date, both Barbara and Martin answered in unison: “Yes, we do believe in miracles.”
How you can help fundraise for St. Paul’s
St. Paul’s Foundation is able to support fundraising events in a number of different ways.
To learn more about staging your own fundraising event, or raising funds online to support St. Paul’s programs, please contact St. Paul’s Foundation at 604-682-8206 or visit http://helpstpauls.com/get-involved