Sudbury mother shares son's transplant journey to raise organ donation awareness (original) (raw)
A Sudbury mother and a graduate student in science communication have come together to bring a powerful organ donation story to Northern MedTalks — a "TED Talk"-like event at Laurentian University where speakers share their stories touching on healthcare.
Donna Stewart collaborated with Laurentian graduate student to spark conversation around transplants and care
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Donna Stewart (right) and her son (left) Patrick in a hospital during his transplant journey, which she now shares publicly to raise awareness about organ donation. (Submitted by Donna Stewart)
A Sudbury mother is sharing her son’s kidney transplant journey on stage with the hope of encouraging more people to think about organ donation.
Donna Stewart will present at Northern MedTalks, an annual event that brings together researchers, health professionals and community members to share stories about medicine and care.
Her talk focuses on her son Patrick Moroso whose health declined after being diagnosed with an autoimmune disease just before his 14th birthday.
Emotionally, it was really tough on my heart being a mom. It was really difficult to see the slow degradation of the kidney function.- Donna Stewart, whose son underwent a kidney transplant.
From diagnosis to transplant
Patrick was just 13 months old when his family learned he had only one functioning kidney.
Just before turning 14, he was diagnosed with Henoch-Schonlein purpura, an autoimmune disease that attacked his one working kidney. Patrick was later diagnosed with chronic kidney disease at 15. His condition worsened over several years eventually requiring dialysis at 19.
The doctors told Stewart's family it could take two to five years for a transplant. Luckily a donor was found less than three months later. The transplant marked a major turning point.
“He is back to his old self,” Stewart said. “He’s able to enjoy life the way that you and I enjoy life.”
She said her son — who loves outdoor activities like fishing and hunting — had become too sick to do the things he enjoyed before the transplant.
Now 21, Patrick has regained much of that independence, she said, though he still requires daily medication and ongoing care.
“I cherish every day that we still have him here, as healthy as he can be,” Stewart said.
Turning a personal story into a public talk
Stewart’s presentation has been developed in collaboration with Milo Vanden Hoven, a Laurentian University graduate student in science communication.
Milo Vanden Hoven, a Science Communication graduate student at Laurentian University. (Submitted by Milo Vanden Hoven)
Students are paired with speakers as part of the program to help shape their talks for a general audience.
Vanden Hoven said his role was to listen to Stewart’s story and help structure it into a compelling and accessible narrative.
“My role was to take bits and pieces of her story and translate it into a talk that flowed well,” he said. “Something that had a clear narrative and would connect with people.”
He helped write the script and designed the presentation.
Donna Stewart (right) stayed with her son, Patrick (left) as he awaited a life-saving kidney transplant. (Submitted/Donna Stewart)
Balancing emotion and information
Vanden Hoven said telling a deeply personal story comes with responsibility — especially when it involves illness and medical treatment.
“I tried to approach it from a really empathetic perspective,” he said. “Letting her speak, trying to keep as close as possible to her own wording and being very mindful of what the audience was comfortable with."
He said personal stories can be a powerful way to communicate complex medical topics.
"It really helps stick in your memory and, you know, with like convincing people if you do include that really nice story to go along with it."
Raising awareness about organ donation
For Stewart the purpose of the talk goes beyond sharing her family’s experience.
"It's telling my son's story. But it's also educating the audience about organ donation [and] some of the myths that go along with that."
Stewart said she also wants people to know there are different ways to support the system, even if they choose not to become donors themselves.
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Stewart has attended MedTalks for the past two years as an audience member, but this year will be her first as a speaker.
“I really do feel that as a voice for organ donation and for future changes in the system that this is a really good avenue to work with," she said.
A community-focused event
Northern MedTalks is a collaborative project organized by Science North and Laurentian University’s science communication graduate program and delivered with the support of Health Sciences North and NOSM University.
Vanden Hoven said the event has a ripple effect in the community.
“A lot of people are interested in health, or they might have concerns or just want to know more,” he said. “It really brings the community together."
Stewart’s talk is one of several presentations scheduled for the event, which takes place Thursday evening, April 23, at Science North.
ABOUT THE AUTHOR
Marjan Massoom is a news reporter for CBC Sudbury, covering northern Ontario. You can reach her at marjan.massoom@cbc.ca and on her Twitter account @marjanmssm.