Mierins family donates $1-million match gift in support of The Campaign to Create Tomorrow
Category: Creating Tomorrow
The true leaders in a community are those who step forward when they hear the call for help, use their position to lift up those around them, and inspire others to do the same.
It is that kind of leadership that drives the Mierins family to give back in significant ways.
Lisa Mierins says her family has personally experienced exceptional care at The Ottawa Hospital over the years, especially when both her parents required hospitalization. In fact, her father, Arnis, was on life support twice in the years before he passed away in 2020. “Both the Emergency Department and Intensive Care Unit teams were unbelievable. They took good care of all of us and took us by the hand at a very difficult time.”
“The Ottawa Hospital is leading the way in the future in healthcare, and we all need to do our part.”
— Lisa Mierins
That compassionate care is what inspires their family to support The Ottawa Hospital — and now, they are using their leadership to motivate others in the community to join them.
From November 1st until December 31st, 2022, the Mierins Family Foundation will match all one-time donations up to a total of $1 million. They hope the opportunity to have a gift doubled will inspire others who recognize the importance of The Ottawa Hospital in our community and the connection we all have to the high-quality care it provides.
“The Ottawa Hospital is leading the way in the future in healthcare, and we all need to do our part,” says Lisa. “Right now, we have an opportunity to move our hospital — and our community — forward.”
The Mierins Family Foundation was created in 2018 with Lisa and her brother, Arnie Mierins, at the helm as co-presidents. The team also includes her sister-in-law, Victoria Mierins, and one of Lisa’s sons, Patrick Bourque. Philanthropy has long been a core value of the family with their strong desire to support their community. And with this most recent gift, they hope to see their family’s $1 million transformed into $2 million for the hospital.
Arnie and Victoria Mierins
Lisa Mierins and her son, Patrick Bourque
“The Ottawa Hospital has treated us like family. They’ve been amazing to us, so we wanted to do something in return for them. We’ve been very blessed in our lives, and this is our way to give back to the community,” says Lisa.
“It is our obligation to do something, and big or small, every donation counts. The Ottawa Hospital was there for my family, and we know how comforting it is to be in a great facility that cares and goes beyond expectations.”
— Lisa Mierins
She adds it’s an opportunity for community members to double their donation and have a bigger impact—no matter what the size of gift. “It can be a $10 donation, which then becomes a $20 donation.”
“Every great city needs a state-of-the-art hospital,” says Lisa. “It is not an option to do nothing. It is our obligation to do something, and big or small, every donation counts. The Ottawa Hospital was there for my family, and we know how comforting it is to be in a great facility that cares and goes beyond expectations.”
Categories:
Updated: February 2024
Nearly three years after undergoing groundbreaking immunotherapy for stage 3C colorectal cancer at The Ottawa Hospital, Haydn Bechthold is making strides — he’s currently in his second year of law school in Toronto and will spend another summer at Emond Harnden, a law firm that has supported our President’s Breakfast.
Published: October 2022
As a young athlete playing semi-pro soccer overseas and going to school, Haydn Bechthold admits he felt invincible. But a diagnosis of colorectal cancer at age 22 quickly changed that perspective. The news was a shock, not only to Haydn but also to his family and friends. He was young, active, and otherwise healthy, so a diagnosis of stage 3C rectal cancer was hard news to digest. “I remember thinking ‘Don’t Google survival rates,’” recalls Haydn.
When Haydn was referred to The Ottawa Hospital Cancer Centre, there was a full team assembled. He met with medical oncologist Dr. Joanna Gotfrit, followed by radiation oncologist Dr. Jenny Jin, and surgical oncologist and Director of Cancer Research, Dr. Rebecca Auer. He learned there was some good news — the cancer hadn’t spread.
Dr. Joanna Gotfrit is a medical oncologist at The Ottawa Hospital.
Dr. Jenny Jin is a radiation oncologist at The Ottawa Hospital.
Dr. Rebecca Auer is the Executive Vice-President of Research and Innovation at The Ottawa Hospital and CEO and Scientific Director at The Ottawa Hospital Research Institute
A most unusual case of colorectal cancer
For Dr. Gotfrit, the first thing she remembers after learning about Haydn’s case was how unusual it was to have a patient his age with this kind of a diagnosis — typically, patients are decades older. “No matter the age, whether it’s a very young patient or someone who’s elderly, it’s never easy to deliver bad news. But there is an extra layer and challenge when patients are that young. It’s life-altering, no matter how the trajectory goes,” explains Dr. Gotfrit.
Haydn Bechthold was diagnosed with colorectal cancer at age 22.
When Dr. Auer left the exam room after meeting Haydn for the first time, she remembers feeling heartbroken, thinking about this young man’s life, his future, and the diagnosis he faced. The standard form of treatment for Haydn was radiation, chemotherapy, and surgery — each one would impact his life. He faced infertility, life with an ostomy bag, and the likelihood of recurrence. “That was hard, but having access to cutting-edge care, we quickly started to think outside the box. I called Drs. Gotfrit and Jin, and we decided to get molecular testing on his tumour,” explains Dr. Auer.
“We knew there was a strong chance we were going to find some rare molecular alterations in his tumour that may drastically change how we would want to approach this case.”
Those molecular markers from testing would be key to determining the path forward for Haydn’s treatment. Dr. Gotfrit explains while they had the diagnosis and knew the stage of his cancer, there were still underlying questions. “We knew there was a strong chance we were going to find some rare molecular alterations in his tumour that may drastically change how we would want to approach this case. And when I say that, I mean, it may open other avenues of treatment for him.”
Those molecular markers from testing would be key to determining the path forward for Haydn’s treatment. Dr. Gotfrit explains while they had the diagnosis and knew the stage of his cancer, there were still underlying questions. “We knew there was a strong chance we were going to find some rare molecular alterations in his tumor that may drastically change how we would want to approach this case. And when I say that, I mean, it may open other avenues of treatment for him.”
Navigating through the cancer journey
As Haydn and his family came to terms with the diagnosis and attended a multitude of tests and appointments, there was one constant: Mary Farnand — his nurse navigator.
A nurse navigator is a specialized oncology position. Mary works in the Cancer Assessment Clinic (CAC), and along with other nurse navigators at our hospital, is the first point of contact for patients who are being diagnosed. “We review the patient’s history, and initiate some of the work-up, such as bloodwork and scans, to make sure it goes as fast as possible and is personalized,” explains Mary.
“It’s a very difficult time in their life. Our role is to try and provide clarity as well as emotional support.”
The CAC provides a central source of information, support, and advocacy for patients. “We receive referrals, review them, and try to understand what the patients need. We help patients manage symptoms, and if they live farther away, can we direct their scans to another hospital closer to home. We are that source of consistency for each patient,” explains Mary.
This role quite literally helps the patient and their family move through the cancer program and better understand what lies ahead. “We navigate with the patient, giving them as much information as possible to help inform their treatment decisions. It’s a very difficult time in their life. Our role is to try and provide clarity as well as emotional support,” says Mary.
Haydn and Mary Farnand at The Ottawa Hospital’s President’s Breakfast.
The CAC provides a central source of information, support, and advocates for patients. “We receive referrals, review them, and try to understand what the patients need. We help patients manage symptoms, and if they live farther away, can we direct their scans to another hospital closer to home. We are that source of consistency for each patient,” explains Mary.
This role quite literally helps the patient and their family move through the cancer program and better understand what lies ahead. “We navigate with the patient, giving them as much information as possible to help inform their treatment decisions. It’s a very difficult time in their life. Our role is to try and provide clarity as well as emotional support,” says Mary.
Haydn is adamant he couldn’t have done any of this without her. “She was such a huge help and so kind to me through this whole process. I remember having so many people contacting me early on and it was quite overwhelming, but Mary was always there. She was always willing to help me figure out what my next move was going to be. She was my constant source of support.”
That support would continue as Haydn’s team got a clearer picture of what kind of tumour they were dealing with.
When should I be tested for colorectal cancer?
People who have an average risk of colon cancer should start getting screened regularly at 50. For those with a higher risk — due to family history, a personal history of chronic inflammatory bowel disease, or other risk factors — it might be recommended to get screened earlier or more often.
Early signs of colon cancer include: persistent changes in bowel habits (unusual diarrhea or constipation), rectal bleeding or blood in stool, persistent abdominal discomfort, a feeling of incomplete bowel movements, weakness or fatigue, and/or unexplained weight loss. If any of those symptoms appear alone or together and persist, seeing a doctor is recommended.
Molecular Oncology Diagnostics Lab plays a key role
Further testing helped the care team plan the best course of treatment for this young man. Some of that testing happened at The Ottawa Hospital’s Molecular Oncology Diagnostics Lab — a first-of-its-kind in Ottawa.
The donor-funded lab is revolutionizing cancer diagnosis and treatment by allowing healthcare providers to analyze the genetic flaws inside tumour cells and tailor therapies to a patient’s individual type of cancer. This improves cancer care by giving care teams the ability to predict which drugs would work best for that particular patient’s illness and which drugs would not be beneficial.
Research conducted in the lab gives patients access to the latest experimental cancer therapies before they are available elsewhere. It’s the third lab of its kind in Canada to use the most advanced genetic analysis technology — next-generation sequencing — to analyze patterns from large groups of genes or proteins. The end goal is to improve the detection and control of cancer with more precise treatments customized for each patient.
Haydn and Dr. Auer at The Ottawa Hospital’s President’s Breakfast.
Photo by Ashley Fraser.
“Haydn got this cutting-edge treatment about one year before the world knew anything about it. This was because we have a highly knowledgeable and courageous team that decided to think outside the box for a 22-year-old with cancer.”
As Haydn’s team awaited the results of his testing, he was prepping for radiation which was set to begin in March 2021. But as the day approached for his first treatment, he got a call that would change everything. “It was a conference call unlike any I’ve ever experienced. All three of my doctors were on the line. They explained biomarker testing on my tumour showed I had what’s known as MSI-H cancer, which meant I was eligible for a certain type of immunotherapy treatment,” recalls Haydn.
This unique sub-type of rectal cancer has responded well in clinical trials to immunotherapy. As the team explained to Haydn and his family, they used data from the literature to come up with an individualized treatment plan — one they believed would give him the best long-term outcome. “Haydn got this cutting-edge treatment about one year before it was widely known. This was because we have a highly knowledgeable and courageous team that decided to think outside the box for a 22-year-old with cancer,” explains Dr. Auer.
Testing also revealed Haydn had Lynch syndrome — an inherited condition that increased his risk of certain cancers, including colorectal cancer. These test results were valuable information that allowed his care team to develop a personalized treatment for his unique case. They believed immunotherapy would give Haydn the best chance to live a long, healthy life.
The hope of immunotherapy
When Haydn was presented with this alternative to the standard of care, he was excited, but also nervous. “While I was nervous to try something new and futuristic like this, I was also excited by the hope immunotherapy offered me. My family and I had complete faith in my doctors, knowing they could access this treatment, which had been successful in very early studies,” says Haydn.
“The scan showed my tumour had shrunk by almost half. It was incredible.”
For Dr. Gotfrit, being able to offer Haydn this treatment option was a game changer. She recalls just eight to 10 years ago, as an internal medicine resident rotating through oncology, there was very little personalized medicine. However, that is changing rapidly. “More and more data, discoveries, and developments about the molecular basis of tumours are coming to light. And, importantly, drugs that could directly target those molecular alterations are being developed. So instead of chemo that essentially ‘shoots to kill’ any rapidly dividing cells in a very nonselective way causing a multitude of side effects everywhere in the body, we’re now developing therapies that are much more selective and can directly target specific mutations in tumours. Being able to identify these molecular alterations is a huge step forward for oncology, giving us more options with a better quality of life. So, it’s a win on all accounts.”
On April 1st, 2021, Haydn started immunotherapy treatment. Within a month of treatment, all of Haydn’s symptoms were gone. No more blood in his stool, no more pain, his energy was back, and he was no longer losing weight.
What is immunotherapy?
Cancer immunotherapy, or immuno-oncology, is a treatment that harnesses a patient’s own immune system to fight their cancer. It works by “training” the immune system to recognize and attack cancer cells, strengthening immune cells to fight cancer, and/or helping the body boost its immune response in other ways. There are many different forms of, and ways to deliver, cancer immunotherapy, including targeted antibodies, vaccines, cell transfers, viral therapies, and more. Cancer immunotherapy is a biotherapy, and it might be used on its own or in combination with other treatments, like surgery, chemotherapy, or radiation.
The news got even better with his first scan two months after treatment began. It was news Haydn was thrilled to hear. “The scan showed my tumour had shrunk by almost half. It was incredible.”
Ready for J-pouch surgery
The immunotherapy treatment continued until July 2021. At that point, the tumour couldn’t be seen on the latest scans and that’s when Dr. Gotfrit called Dr. Auer to say this young man was ready for surgery.
By August, a major operation was planned to remove the remaining signs of the tumour and the surrounding lymph nodes. Haydn also underwent a procedure known as J-pouch surgery. This would remove his entire colon to help eliminate any future risk of cancer, while also allowing him to live a normal life without an ileostomy bag. It was during this surgery that Dr. Auer made a remarkable discovery — there were no signs of cancer. “This was a really wonderful moment. Thinking back to the day I met him, and I thought for sure he was going to break my heart, here we were with a really amazing outcome. This was a young man who potentially had his whole future back,” says Dr. Auer.
Once the J-pouch healed, Haydn was back in the operating room in November of 2021, this time with Dr. Shaheer Tadros and Dr. Auer to remove the temporary ileostomy and finish the J-pouch procedure. He was about to get his life back.
How J-pouch surgery works
BEFORE SURGERY
Colon and rectum present
Patient suffering from symptoms
DURING SURGERY
Colon and rectum removed
J-shaped pouch constructed from small intestine and attached to anus
Ileostomy bag placed during surgery to help with the healing of the pouch
SECOND-STAGE SURGERY
Ileostomy bag reversed
POST SURGERY J-pouch and anus fully functioning
The role research plays in changing the course of cancer care
When faced with a challenging cancer case, our cancer experts didn’t settle for the standard of care — knowing the long-term impact it could have on Haydn’s life. Instead, they dug deep and offered him an alternative with better long-term quality of life — immunotherapy treatment.
Since starting her own research laboratory at The Ottawa Hospital in 2007, Dr. Auer has focused on the interplay between cancer, surgery, and the immune system — making many important discoveries. “Surgery is very effective in removing solid tumours. However, we’re now realizing that, tragically, surgery can also suppress the immune system in a way that makes it easier for any remaining cancer cells to persist and spread to other organs.”
Dr. Auer’s team has discovered how this happens and they are now testing different strategies in the lab and in patients to modify the immune system and prevent cancer from coming back after surgery. These trials often include patients with colorectal cancer.
Just a few years ago, Haydn never gave much thought to research, let alone cancer research, but his views are very different today. “There are so many advances every year in this field, especially clinical trials, it’s really exciting. I think a lot of people hear the term clinical trials, myself included when I was in treatment, and are quite scared. But a lot of the time, it’s the most up-to-date or newest form of treatment and possibly the best, so the importance of research is massive.”
Setting his sights on the future
Just a few months after Haydn’s second surgery he started feeling like his old self. He began exercising again and putting on weight. Incredible progress in a very short time after his shocking diagnosis.
Today, Haydn continues to be monitored closely by Dr. Gotfrit, and will be for the next few years, but the cancer is gone and he’s getting back his life. As far as his medical oncologist is concerned, that’s the best possible outcome she could have imagined for him. “This is exactly why you go into medical oncology. It’s the absolute best feeling in the world to put in all that effort, thought, and agonize over what’s the right thing to do for this young man. And then make the best decision possible and see that it worked as well as or better than you ever could have imagined. It’s hard to describe how good that feels,” says Dr. Gotfrit.
Mary Farnand, Dr. Auer, Haydn and his parents at The Ottawa Hospital’s President’s Breakfast.
Photo by Ashley Fraser.
“I also realize how incredibly fortunate I was to have The Ottawa Hospital and this team of doctors who wouldn’t settle for traditional treatments — who thought outside the box to give me the best life possible.”
For Haydn, it’s a team effort he won’t soon forget. “I never worried about death before this, but I realized I’m not invincible. I also realize how incredibly fortunate I was to have The Ottawa Hospital and this team of doctors who wouldn’t settle for traditional treatments — who thought outside to box to give me the best life possible. I felt like they all really cared.”
Now living in Toronto and going to law school, you can still find Haydn kicking the soccer ball around for fun, and he says with a smile that he might not be done with soccer yet. Now he has time on his side to make that decision.
Listen to Haydn share his story in his own words in episode 69 of Pulse Podcast.
Categories: Clinical Trials, World-Leading Research, World-Leading Research
An unwavering drive to help others leads to generous donation
Longtime nephrologist Dr. Shiv Jindal and wife Sarita donate $1 million to the Campaign to Create Tomorrow .
Dr. Shiv Jindal and his wife, Sarita, share a philosophical outlook when it comes to their philanthropy: If there’s something good and important happening for the benefit of the community, why not be part of it?
This straightforward perspective inspired them to support the creation of the New Campus Development on Carling Avenue through our historic Campaign to Create Tomorrow. With this project, they saw an opportunity to help their community while offering a sentimental nod to the hospital campus where Dr. Jindal spent an impressive 45-year career as a nephrologist after moving to Canada in 1967.
"If an opportunity comes your way to do something good, do it now. You may not have another chance"
Dr. Shiv Jindal and wife Sarita donate $1 million to the Campaign to Create Tomorrow.
Dr. Jindal helped establish the Department of Nephrology at the Civic Hospital when the field was in its infancy. Professionally, he is a passionate advocate for disease prevention, and in 2007, the Jindals donated $1 million to fund a chair at the hospital’s Kidney Research Centre for research to help prevent chronic kidney disease. Their most recent donation of $1 million underscores their profound desire to help make their city, and beyond, a healthier place. The Jindals view this gift as an investment in a campaign that has the power to improve the lives of patients and help redefine our approach to preventative healthcare, particularly at the New Campus Development.
The $500-million Campaign to Create Tomorrow ― the largest fundraising campaign in Ottawa’s history ― sets in motion a vision to transform how the world delivers healthcare by building the most technologically advanced hospital in Canada and taking groundbreaking research and innovation to unprecedented heights.
The Jindals have a long legacy of generosity and are highly respected among our local Indo-Canadian and medical communities. But their desire to improve the lives of others has never stopped at the Ottawa city limits. Most winters from 1995-2015, the Jindals would spend four to six weeks in India, working with more than 60 villages on disease prevention, education, and job creation. It would seem altruism is in their very DNA.
Thank you, Shiv and Sarita, for your inspirational generosity and steadfast commitment to making our city, and our world, a better place.
About the Campaign to Create Tomorrow
The Campaign to Create Tomorrow is the largest fundraising campaign in our region’s history. It will help fulfil the most ambitious vision ever for the future of The Ottawa Hospital, focused on four critical pillars.
See how we’ll become the most technologically advanced hospital in the country, using the latest tools to provide the right care in the right space with the right provider.
Through our unique collaborative model of clinicians and researchers working side-by-side, we will bring groundbreaking discoveries to patients in Ottawa — and around the world.
Subhas “Sam” and Uttra Bhargava have been giving back to their community since they first met 60 years ago — and that giving took on new meaning after a series of personal losses.
Together, they cared for Sam’s father and mother who suffered from Parkinson’s and Alzheimer’s respectively. They also saw their oldest daughter, Suruchi, left paralyzed from the neck down after she was hit by a drunk driver. Sadly, all three family members passed away from their deteriorating conditions. These tragedies ushered Sam and Uttra into the world of healthcare and research, inspiring them to step up for others facing similar challenges.
“We knew we needed to do something so nobody would suffer as we did,” says Uttra.
“We knew we needed to do something so nobody would suffer as we did.”
– Uttra Bhargava
Uttra and Sam Bhargava at the unveiling of the Bhargava Neurosciences Clinic.
Volunteers and philanthropists for decades, the Bhargavas are shining a light on the research being conducted at The Ottawa Hospital — forming a close bond with Dr. Michael Schlossmacher, Director of the Neuroscience Program and clinician scientist working to improve the lives of those with neurodegenerative diseases.
“Research is the only thing that provides hope and innovation.”
– Sam Bhargava
“Dr. Schlossmacher is a great scientist and a great man…I admire him so much,” says Uttra, as she and her husband speak about the importance of keeping some of the world’s greatest research minds in Ottawa. “There’s so much talent,” adds Sam. “They can achieve anything.”
This belief has inspired Sam and Uttra to support The Ottawa Hospital’s research and care for patients suffering from brain and spinal cord damage. They hope their support will help lead to cures for some of the most devastating conditions and injuries — but they know it won’t happen overnight. They call their support a down payment on their dream for a cure. “Research is the only thing that provides hope and innovation,” says Sam. “You just don’t give up.”
The Bhargavas give generously — and consider themselves fortunate to be able to do so. In 2012, they donated $1 million to establish The Bhargava Research Chair in Neurodegeneration at The Ottawa Hospital — Dr. Schlossmacher is the current Chair holder, and Sam is also the Founding Chair of the Parkinson’s Research Consortium. In honour of their oldest daughter, they also established the Suruchi Bhargava Chair in Spinal Cord Research, which supports neurosurgeon Dr. Eve Tsai’s research.
Uttra and Sam Bhargava with Dr. Michael Schlossmacher.
Most recently, they donated $500,000 to the Campaign to Create Tomorrow — a Campaign that will not only support the construction of the New Campus Development, which will be home to a new neuroscience institute, but will also take research to unprecedented heights.
“If you want to help the community, you have to put the money into research. Unless we try, it will not happen.”
– Uttra Bhargava
In addition to their support of The Ottawa Hospital, Sam and Uttra’s philanthropy has extended to many other community initiatives, such as early literacy programs, hearing screening programs for pre-schoolers, and they were instrumental in the Parliamentary declaration of National Child Day in Canada. Today, along with their work supporting research at The Ottawa Hospital, they are pushing to make changes in how we care for our aging population. With the help of a team of early supporters, they are mobilizing at the grassroots level to petition the House of Commons to put more focus on the health and well being of seniors and those living with disabilities. Sam and Uttra believe it is through research and innovation that we can improve the quality of life for all Canadians.
As business and community leaders, the Bhargavas are using their voices to lift up those around them — many of whom they will never even meet. They are working to shield others from the tragedies they suffered — through financial support and by giving their time and energy to the causes that personally affected them. “We want to give the money,” says Uttra, “and at the same time, we want to work with the community.”
“And if you want to help the community, you have to put the money into research. Unless we try, it will not happen.”
Uttra and Sam Bhargava with Dr. Eve Tsai.
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
Categories: Donors
Community-minded couple turn their gratitude into action
Tony Sottile and Barbara Robertson make their largest philanthropic gift by donating $2 million to the Campaign to Create Tomorrow
Some people have a knack for recognizing a big moment. An insight and a confidence to take action when such a moment arises. Tony Sottile and Barbara Robertson are two of those people — humble, hard-working, and keenly able to recognize an important project when they see it.
Tony’s family arrived in Canada in 1966 from San Martino in Pensilis, Italy, and his parents, Giuseppe and Tina, worked hard to build a new life in Ottawa. They ran Kanata Cleaners for the next three decades, instilling the value and reward of hard work in their children. With a mechanical engineering degree under his belt, Tony set off on his own path, and in 2002, he became the President of Modern Niagara, then CEO in 2004 — a position he held until his retirement in 2016.
Despite his success, or perhaps because of it, Tony has remained humble, committed to giving back to the community. He and Barbara have been long-time supporters of many charitable causes in Ottawa, rallying others to join them. Barbara, a retired teacher, volunteers weekly at the Shepherds of Good Hope and Ronald McDonald House, while Tony serves on The Ottawa Hospital’s Board of Governors. These are just a few examples of the many ways they support the health of our community.
Their recent gift of $2 million to the Campaign to Create Tomorrow demonstrates a deep gratitude to the city they feel has given them so much. They view their gift as an investment in the creation of a global healthcare hub and educational facility — a project that will have an impact on the economy that is without parallel.
The Campaign to Create Tomorrow sets in motion a vision to transform how the world delivers healthcare — by building the most technologically advanced hospital in Canada and taking groundbreaking research and innovation to unprecedented heights.
Tony Sottile and Barbara Robertson made a major donation to the Campaign to Create Tomorrow.
Thank you, Tony and Barbara, for your inspirational generosity and your commitment to our community and our hospital.
About the Campaign to Create Tomorrow
The Campaign to Create Tomorrow is the largest fundraising campaign in our region’s history. It will help fulfil the most ambitious vision ever for the future of The Ottawa Hospital, focused on four critical pillars.
See how we’ll become the most technologically advanced hospital in the country, using the latest tools to provide the right care in the right space with the right provider.
Through our unique collaborative model of clinicians and researchers working side-by-side, we will bring groundbreaking discoveries to patients in Ottawa — and around the world.
Growing up in Mumbai, India, Dr. Pradeep Merchant dreamed of becoming a doctor. His father’s youngest brother was a physician, and Dr. Merchant saw him to be a role model — one who helped chart his path for the future.
That path saw Dr. Merchant immigrate to Canada in the mid 80s, where he enrolled at Queen’s University to study pediatrics. A super-specialty in neonatology captured his interest and took him to SickKids in Toronto, where he finished his training. But he was soon enticed to come to The Ottawa Hospital, and his interest in a research fellowship solidified that decision — that was 30 years ago.
Ottawa is where Dr. Merchant and his wife, Anita, would call home and raise their family. For the past 25 years, Dr. Merchant has been the Site Chief of the neonatology division at Civic Campus of our hospital, where he’s dedicated himself to caring for our tiniest and most vulnerable patients. He has been their voice — always championing for the latest technology and tools to care for pre-mature babies and their mothers.
Dr. Pradeep and Mrs. Anita Merchant
“We’ve done so well with an almost 100-year-old building at the Civic Campus serving the population — you can just imagine what the New Campus Development will mean.”
– Dr. Pradeep Merchant
That dedication includes making our hospital the best it can be. For Dr. Merchant, that means giving back by volunteering on the Board of Directors of The Ottawa Hospital Foundation, and most recently, as a Campaign Executive for the Campaign to Create Tomorrow.
In addition to this latest role, it was important to both him and Anita to support the Campaign with a significant donation — and they hope it will inspire others to give as well. That’s why they’ve committed to matching the contributions of new monthly donors until November 15th, for up to $50,000.
They believe the Campaign, which focuses on taking research to unprecedented heights and supporting the construction of the New Campus Development on Carling Avenue, will be a game changer for the city. “We’ve done so well with an almost 100-year-old building at the Civic Campus serving the population — you can just imagine what the New Campus Development will mean. It will be an absolute marvel of engineering. So, when you look at a building of that stature, not only are we going to provide the best possible care, but what excites me is we are going to attract the best physicians from around the world,” he says.
Dr. Merchant doesn’t shy away from sharing that message with others in our community — including the Indo-Canadian community, with whom he has worked closely over the years. “Philanthropy starts from within and at home. So, when people see I’m not just coming and talking, but I’m doing what I can do to help, I hope it inspires them to want to do what they can to help as well. Because when you have amazing, transformational, cutting-edge healthcare within our city, it benefits everybody, not just a few people.”
It’s the people of our city and their future that truly motivates Dr. Merchant to be a part of this important campaign. “While my career is in its twilight years, I’m as excited as when I started at this hospital in 1992, because this is just a phenomenal opportunity for us to contribute or be part of this entire movement, and to deliver the very best healthcare to the community for the next 100 years.”
“Philanthropy starts from within and at home. So, when people see I’m not just coming and talking, but I’m doing what I can do to help, I hope it inspires them to want to do what they can to help as well.”
– Dr. Pradeep Merchant
Dr. Merchant’s philanthropy and tireless efforts to give back over the past several decades are not lost on anyone. He received one of the highest honours when he was awarded the Order of Canada in 2021. “Canada has given me so much and to get the call from the Governor General’s office, even today, chokes me up. I’m humbled and honoured. It’s not something I ever anticipated or expected. I thank not only our country but our society for making me what I am today.”
Categories:
Published: September 2022
When Geneviève Bétournay reflects on the past decade, she thinks about the adversity she has overcome. As the owner of the Art House, a coffee house/art gallery, she’s endured keeping her business alive during the pandemic. However, an even bigger challenge was her diagnosis of multiple sclerosis (MS) in 2010. Today, thanks to a life-changing stem cell transplant at The Ottawa Hospital, she has a whole new perspective on the possibilities that lie ahead for her.
Geneviève is no stranger to adapting to change. She was in her early 20s and going to university when she started to have issues with her vision. Especially during stressful times, her vision would become blurry, but she didn’t associate it with anything more serious. That changed when she was 23 and living in Japan — new symptoms emerged. “I had more issues with my vision. It was getting worse and that was scary. Also, my foot would drop — it would drag when I tried to move it and there were other issues related to movement,” recalls Geneviève.
Genevieve Betournay was treated for multiple sclerosis at The Ottawa Hospital.
News of MS diagnosis hits hard
When she returned home from Japan, she started to seek answers, but it was some time before anyone would connect the dots and uncover the problem. “Ultimately, it was the vision issues that ended up getting me to see a neurologist because basically, my optometrist was able to get my prescription right, but my vision was still blurred,” explains Geneviève.
It was Geneviève’s neuro-ophthalmologist that first revealed the severity of what she was facing. Early indications suggested her symptoms could be the result of a brain tumour or MS. “I remember that day sitting in the office. I was extremely emotional because I didn’t know what that meant to be honest. When you grow up, in our society as it is, chronic illness is not something that’s talked about all that often.”
An MRI finally provided Geneviève with answers. But along with those answers came the shock of an MS diagnosis.
“What is life with MS? What would life even look like? It just sounded scary. I didn’t know what was going to happen to me.”
MS is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation, and balance. For Geneviève, there were so many unknowns and even more questions. “What is life with MS? What would life even look like? It just sounded scary. I didn’t know what was going to happen to me,” she says.
1
Fatigue, cognitive disruption, mood changes
2
Vision issues such as vision loss, blurred vision, and double vision
3
Difficulty with speech and swallowing
4
Incontinence and digestive problems
5
Difficulty with hand-eye coordination and numbness/tingling in hands
6
Sexual dysfunction
7
Loss of power in a limb or numbness
8
Walking difficulties and balance problems
Effects of MS on the body
Fatigue, cognitive disruption, mood changes
Vision issues such as vision loss, blurred vision, and double vision
Difficulty with speech and swallowing
Incontinence and digestive problems
Difficulty with hand-eye coordination and numbness/tingling in hands
Sexual dysfunction
Loss of power in a limb or numbness
Walking difficulties and balance problems
Groundbreaking MS treatment pioneered in Ottawa
Once Geneviève and her family processed the news of her diagnosis, she learned everything she could about the illness. A family friend, who happens to be a nurse, had heard a lot about Dr. Mark Freedman and his transformational MS stem cell transplant research in collaboration with Dr. Harold Atkins and encouraged Geneviève to get in touch with The Ottawa Hospital’s MS Clinic. Meeting Dr. Freedman was a pivotal day that would shed new light on her future. “I see it as one of those very lucky life-changing moments when I made that call,” explains Geneviève.
Twenty-four years ago, many were skeptical when Drs. Atkins and Freedman first proposed the idea of using stem cells to reprogram the immune system to halt the progression of MS. Today, they are known for pioneering this groundbreaking treatment which is now being used in many countries around the world. In fact, it was serendipity that led Dr. Atkins, a hematologist, and Dr. Freedman, a neurologist, to meet while they were working on a different project. The two started to discuss stem cell transplants and that would ultimately lead to the transformation of MS treatment.
While this was a time of uncertainty for Geneviève, she felt she was in the right hands to handle the complexity of her case. “Dr. Freedman was very kind from the beginning. It was very comforting to know that there were multiple treatment options if something didn’t work.”
Twenty-four years ago, Drs. Mark Freedman and Harold Atkins proposed the idea of using stem cells to reprogram the immune system to halt the progression of MS.
Initially, Geneviève received the first line of treatment for a year that included injections every two days; however, it didn’t provide positive results. Next in line was a form of chemotherapy that targeted her immune cells. She remained on that treatment for two years, but once again, the results didn’t have the impact her medical team had hoped for, so, in January 2013, Dr. Freedman recommended the MS stem cell transplant.
MS symptoms were progressing quickly
At this point, Geneviève’s MS was progressing quickly. Both of her eyes were now affected, and increasingly her mobility was impacted. “I felt numbness below the waist. It was very difficult for me to walk unassisted. I would need something to hold on to — either a person or a wall or something like that. There were also issues with muscle spasms and dizziness,” explains Geneviève.
Geneviève in 2013, receiving a stem cell transplant to treat multiple sclerosis.
Headaches were also a challenge, and life was becoming more difficult for this young woman who was working on her Master’s degree at UOttawa. Her degree was in organic chemistry, and lab work was challenging because of blind spots in her vision and a lack of dexterity. When it came time to decide whether to participate in the transplant, she explains there was no decision to make. “I knew about this treatment from the beginning. It was always in the back of my mind. I had already processed it. I do remember being sad that nothing else had worked and I had to do this or else my condition would continue to go downhill rapidly. It gave me hope but it was a very emotional day,” recalls Geneviève.
“I felt numbness below the waist. It was very difficult for me to walk unassisted. I would need something to hold on to.”
She remembers the compassionate support she received from Dr. Freedman when it was time to consider the transplant. He explained it would be one of the hardest decisions she’d ever make and encouraged her to take the time to make sure it was right for her.
Geneviève learned that she could become infertile because of the procedure, so in the few months before her transplant, she had some of her eggs harvested and she also received a shot that could allow her eggs to go into “hiding” during the treatment.
Time for the MS stem cell transplant
In July 2013, Geneviève received her stem cell transplant. The process begins with purifying and freezing the patient’s stem cells which will later be “cleaned” in the lab. The next step is a strong chemotherapy treatment to destroy the patient’s immune system. The final step is the transplant of the clean stem cells back into the patient — that’s when a new immune system starts to develop.
It’s not an easy process, but Geneviève was focused on what the result might give her. “Mentally and physically, it was challenging, but to be honest, I’m a different person today because I went through that.”
See the journey stem cells take during autologous stem cell transplantation.
How did a stem cell transplant halt MS?
Geneviève underwent an immunoablation and autologous hematopoietic stem cell transplantation (IAHST) to treat her MS. It’s a groundbreaking treatment pioneered by researchers at The Ottawa Hospital for patients with certain forms of multiple sclerosis. It involves harvesting and treating a patient’s own stem cells to remove traces of disease, eliminating their immune system, and then creating a new one using their newly “cleaned” stem cells. IAHSCT is currently being used to treat two other rare autoimmune disorders: myasthenia gravis and stiff person syndrome.
“Those moments where something happened that I wasn’t able to do before – it’s like pure euphoria. It was joy. It was gratitude for something that you never thought you’d ever feel again.”
Geneviève says she was in the hospital for eight days before she was able to go home because she didn’t have any major infections or require constant monitoring. Also at that point, her cell counts started to go back up — her new immune system was starting to grow. She returned to the hospital as an out-patient for several months.
The next step was to determine the impact the transplant would have on her overall health. It took between eight and 12 months for Geneviève to recover, and then she started to notice tiny improvements. “That’s when I first noticed I could do something that I couldn’t do before, or I had lost the ability to do. The first thing I noticed was I could lift my right leg, because my right side was more affected than the left.”
As Geneviève saw these small improvements begin, she tried to temper her expectations. She didn’t want to let her hopes get too high, but she admits sometimes she couldn’t resist. “Those moments where something happened that I wasn’t able to do before — it was like pure euphoria. It was a joy. It was gratitude for something that I never thought I’d ever feel again.”
Was it all worth it?
Over the past decade, Geneviève has seen every single symptom get better. From lifting a single toe to moving a foot to being able to jump again, and then walking several kilometres without tripping and falling to the ground — these are big milestones on her road to recovery. The signs of MS are disappearing. “To date, it would seem I have not had any new relapses. No new disease activity. My vision improved, and I continue to recover, albeit very slowly as it takes a while to heal.”
When Geneviève reflects on how far she’s come, had she not undergone the stem cell transplant, she believes she would likely be in a wheelchair today. “It was 100% worth it. Just the fact that I can move blows my mind. I have a great deal of gratitude for the doctors and everything the hospital had done for me.”
And today, with only a slight limp, she walks up the steps into the Art House and appreciates each moment she has to celebrate the creative artists in our city and transformational treatment she received at our hospital. “It’s priceless what I have gained. Aside from developing MS, nothing has had a more extensive impact on my life than undergoing this stem cell treatment. Simply put, it saved my life, or perhaps you could say it gave me a second one.”
Before her stem cell transplant, Geneviève had difficulty walking unassisted.
“It’s priceless what I have gained. Aside from developing MS, nothing has had a more extensive impact on my life than undergoing this stem cell treatment.”
Listen to Geneviève share her journey with MS in episode 66 of Pulse Podcast.
Transformative gift is deeply personal for the Jones family
The Jones Family Foundation donates $10 million to the Campaign to Create Tomorrow and continues to shine a light on the need for kidney research and organ donations.
In the business world, just as in the world of healthcare, numbers matter. Customers served and problems resolved. Patients seen and lives saved. But numbers only tell part of the story.
That’s certainly been the experience for the Jones family. Their journey with The Ottawa Hospital has involved some critical numbers: 33 — the years June Jones has lived with IgA nephropathy, a form of kidney disease; 10 — the years she’s depended on lifesaving dialysis; 8 — the hours per day she’s frequently connected to a dialysis machine.
But the number that matters most is 1. June needs one new kidney, and the Jones family has one fervent hope for a cure.
Like us, the Jones family knows that hope can often be found in the numbers, and they believe their transformative gift will help find a cure for kidney disease, once and for all.
That’s why June and her husband Russ (Shopify’s first CFO before his retirement), with their two grown children and their families, have made a $10-million donation to the Campaign to Create Tomorrow through their family foundation.
The Jones family at Russ and June’s downtown home. Photo by Ashley Fraser.
“We want to help researchers at The Ottawa Hospital have the support they need to find cures right here in our hometown.”
— The Jones family
The $500-million Campaign to Create Tomorrow sets in motion a vision to transform how the world delivers healthcare — by building the most technologically advanced hospital in Canada and taking groundbreaking research and innovation to unprecedented heights.
Philanthropy is a central tenet of the Jones family philosophy. They’ve given generously to a multitude of charities and are longtime supporters of kidney research, both through the Kidney Foundation and here at our hospital. In fact, three laboratories at our Kidney Research Centre at the General Campus and the Hemodialysis unit at the Riverside Campus bear the Jones Family Foundation name.
Thank you, Jones family, for your ongoing transformative generosity and your unwavering belief in a brighter future. From your inspiring advocacy for organ donations to your dedicated support of healthcare, our hospital and our city will benefit from your kindness.
Hear June Jones in her own words explaining what it’s like waiting for a second kidney transplant and why research is so important.
The Campaign to Create Tomorrow is the largest fundraising campaign in our region’s history. It will help fulfil the most ambitious vision ever for the future of The Ottawa Hospital, focused on four critical pillars.
See how we’ll become the most technologically advanced hospital in the country, using the latest tools to provide the right care in the right space with the right provider.
Through our unique collaborative model of clinicians and researchers working side-by-side, we will bring groundbreaking discoveries to patients in Ottawa — and around the world.
Lukas Marshy takes us on his journey of the night he arrived at The Ottawa Hospital in distress and extreme pain. He needed specialized care from our neurosurgery team for a rare condition that resulted in a massive brain hemorrhage. Here is Lukas’ story in his own words.
It was late afternoon on a cold winter January day in 2012 when I was rushed to The Ottawa Hospital. Something was very wrong. That was ten years ago — but it’s a time in my life I will never forget.
I was 16 years old at the time and was playing video games — nothing out of the ordinary for a teenage boy. I remember I reached down to plug in the speaker for my computer and I felt dizzy — the room around me started spinning. I also realized I had a headache, and it was pretty bad.
I went upstairs to let my dad know, and he initially thought I was coming down with something. He gave me some Tylenol for the headache, and I went to lie down in my room. But when I looked up at the ceiling, it was spinning — I couldn’t even look at it. I yelled for my dad.
At that point, I thought I was going to be sick to my stomach, and he said, “Let’s get you down to the bathroom.”
When he was 16 years old, Lukas Marshy was treated for an ateriovenus malformation (AVM) at The Ottawa Hospital.
Red flags raised
Then I realized I couldn’t stand up — that’s when the red flags went up for my dad. He helped me to the bathroom, and I vomited. I remember clutching onto the toilet because it felt like I was being pulled to one side of the room. It felt like in a movie when someone opens the airplane door and everything gets sucked outside. I was holding on to the toilet bowl so tight.
Eventually, out of exhaustion, I passed out and I was lying on the bathroom floor. I could hear my dad’s voice trying to prompt me to go back to my bed, but I couldn’t respond. He finally said, “If you don’t stand up, I’m going to have to call an ambulance.” And I thought to myself, ‘That’s perfect, I’m going to stay down because I need help.’ I just couldn’t say the words.
“I remember clutching on to the toilet because it felt like I was being pulled to one side of the room. It felt like in a movie when someone opens the airplane door and everything gets sucked outside. I was holding on to the toilet bowl so tight.”
– Lukas Marshy
When the paramedics arrived, they asked lots of questions. They were concerned I had overdosed on drugs or had been drinking, but I knew that wasn’t the case. Eventually, I was able to tell them no.
They got me onto the stretcher, and we headed outside. I remember seeing the snow and feeling the cold on my body as they loaded me into the ambulance. They took me straight to CHEO where a CAT scan of my brain indicated a massive hemorrhage. At this point, doctors recommended that I be transferred to The Ottawa Hospital’s Civic Campus for specialized surgery.
Transferred to The Ottawa Hospital after brain hemorrhage diagnosis
While I was in and out of consciousness, and my memory is a bit spotty, I do remember being in extreme pain. I also remember my mom being by my side. When I think back on that night and arriving at the hospital, that was the worst part of the entire journey — the pain in my head was excruciating.
I was diagnosed with Arteriovenous Malformation (AVM). We learned I was born with an abnormal tangled mass of blood vessels in the back of my head. An intricate surgery by a skilled team was required, and as I waited for them to prep for surgery, I was given medication to ease the pain. That’s the first time I started to feel more comfortable — even though brain surgery was looming.
What is a brain AVM?
An arteriovenous malformation —or AVM — is an abnormal tangle of the blood vessels connecting an artery to a vein. An AVM disrupts normal blood flow and deprives the surrounding tissue of oxygen. AVMs can occur anywhere in the body, but when they’re in the brain, they’re more likely to cause long-term effects. About 88% of AVMs go undiagnosed, and once diagnosed, brain AVMs can usually be treated to reduce risks.
Normal blood vessels.
An abnormal tangle of blood vessels.
My dad stayed with me the whole time I was in the hospital — he even slept by my side at night. The team caring for me was kind, but having my dad with me was an added level of comfort.
“It was almost as though a calmness came over me. I wasn’t nervous at all because whatever was happening to my brain at the time was going to get better.”
– Lukas Marshy
Lukas was treated for a massive brain hemorrhage at The Ottawa Hospital.
When my dad told me I was going to have brain surgery, I reflected on an actual conversation I had with friends a couple years before. We asked each other “What is a type of surgery you’d never want to have?” If you can believe it, I said brain surgery because that seemed the most dangerous.
But when I was actually faced with that reality, I just remember thinking, “No problem.” It was almost as though a calmness came over me. I wasn’t nervous at all because whatever was happening to my brain at the time was going to get better. I also had Dr. John Sinclair in my corner — he’s amazing.
Facing surgery for a brain hemorrhage
By 7 a.m. the next morning, I was ready for surgery.
It was an eight-hour procedure. The hemorrhage was in the cerebellum area of my brain, so the lower left back side of my head. Dr. Sinclair and his team removed most of the clot, which turned out to be pushing against my brain stem. That was scary to learn, but thankfully it didn’t cause any permanent damage. In fact, Dr. Sinclair explained they left a small portion of the clot there, which they cauterized, because they needed the swelling on my brain to come down before they could remove the clot completely.
The surgery was successful, but I wasn’t done yet. I was placed in a medically induced coma for the first few days, and I remained in hospital for two or three weeks before I could go home. That first homemade sandwich I ate when I got home is something I won’t forget. I think it was the best egg salad sandwich I’ve ever eaten! My siblings were all home with me — and my dog — it was so good to be back.
Road to recovery
On February 28, 2012, I returned to The Ottawa Hospital for the second surgery to remove the malformation which had caused the bleeding. During this operation, the remaining clot and AVM were removed from my brain and Dr. Sinclair placed a titanium mesh about the size of a credit card to replace where a piece of my skull had been removed during the first surgery. Once again, I was put in a medically induced coma for three days, and when I woke up my recovery began.
“To this day, my family says Dr. Sinclair not only saved my life, but he made me smarter too!”
– Lukas Marshy
Next up was physiotherapy to help get my strength back. I was determined to get back home for good, so just over a week later when my care team asked me to show them how I managed the stairs, I tackled those steps with determination. I guess my progress was convincing because after that I was cleared to be discharged.
Lukas during his recovery.
A whole new perspective on life
I had to use a wheelchair for a short period before progressing to a walker, but as a 16-year-old, I was ready to ditch it as soon as possible. I resumed my schoolwork at home for a few weeks until I was strong enough to get back to the classroom. I was finally reunited with my friends and was able to return to my grade 11 classes.
Something important to note, my marks after the surgery were in the 90s. I was thrilled because, you see, in grade 10, my marks weren’t anywhere near that level. In fact, I usually got 60s and some 50s. So, to this day, my family says Dr. Sinclair not only saved my life, but he made me smarter too!
“The Ottawa Hospital gave me a second chance at life.”
– Lukas Marshy
I’ve been great ever since. I haven’t had any long-term mobility or balance issues — I was incredibly lucky. Lucky that my dad took those first symptoms seriously and called for help. Lucky to have the brilliance of neurosurgeon Dr. Sinclair and the other healthcare providers leading my care. And lucky to be living a normal life today, because if the AVM hadn’t been discovered early after the symptoms started, it may have resulted in serious disability or death because of where it was located.
Lukas on graduation day.
Today, Lukas Marshy is married with two children.
The Ottawa Hospital gave me a second chance at life. Today, I’m married, have two young children, and I have a great job at Queen’s University in Kingston. That experience ten years ago as a 16-year-old changed my whole perspective on life. If this had not happened to me, I wouldn’t be the person I am today. I’ve been cherishing life ever since.
WATCH: Lukas Marshy reflects on his treatment and shares where he is now, thanks to the skill and dedication of his care team.
Download episode #64 of Pulse Podcast to hear Lukas Marshy’s story.
Categories: Neuro, Patient Care, Patient Care, Patient Care, Strengthening Critical Services
Originally published: September, 2020 Updated: July, 2022
“Leaner and meaner than ever”
When Fran hit the 18-month mark of his recovery, his care team didn’t want him to get his hopes up. Typically, once patients with Guillain Barré Syndrome (GBS) reach that point, they don’t see much more improvement, but five years later, Fran is still making strides. “I was able to stand up on skates this past winter and started skating for the first time since my diagnosis. Then just a month ago, I regained feeling in my feet. It was a feeling that I haven’t experienced since I got GBS,” explains Fran.
He’s even back to long-distance cycling and is feeling stronger each day. “I’m leaner and meaner than ever,” says Fran with that infectious smile.
Read Fran’s original story below and learn why he’s so grateful for the care he received at The Ottawa Hospital.
Long-distance cyclist Fran Cosper described himself as being in the best shape of his life as he headed into the winter of 2017. However, in mid-February he woke up in the middle of the night unable to feel his legs. The next morning, when Fran tried getting out of bed, he slammed onto the floor – his strong legs suddenly useless. Soon after, he was diagnosed with Guillain Barré Syndrome (GBS) – facing the possibility of permanent paralysis. Little did he know the road ahead would involve a team of experts, the help of 3D virtual reality at The Ottawa Hospital, and a determination not only to walk again, but also to help other patients.
When Fran first experienced those sudden symptoms, he initially thought it couldn’t be anything serious as he was very health conscious. He attempted to make his way to the basement that morning to work out. “I went to get on my hands and knees, and fell face-first on the carpet. I thought, ‘Well, I can’t move. This is much more serious.’ My wife, Elise, came down and saw that I had facial paralysis, and thought I’d had a stroke.”
But Fran knew that strokes typically affect only one side of the body and that something else — something serious — was happening.
What is Guillain Barré Syndrome?
Fran in hospital.
After a thorough assessment, Fran was diagnosed with GBS. This rare autoimmune disorder causes the immune system to attack the nerves, damaging the myelin sheath, which is the nerves’ protective covering. As a result, the brain can’t transmit signals to the nerves in the muscles, causing weakness, numbness or, as in Fran’s case, paralysis.
An infection or virus can bring on GBS. The 56-year-old had had two colds back-to-back, which may have thrown his immune system into overdrive. Within days, his balance was off, and he had difficulty lifting pots to cook dinner. Hours later, the disease was full blown, attacking his nervous system and Fran couldn’t move.
“It was like having an out-of-body experience. I mean my brain was working fine but my body wasn’t doing what I asked it to do.” – Fran Cosper
“We see patients with Guillain Barré Syndrome at The Ottawa Hospital Rehabilitation Centre probably five or six times a year,” says Dr. Vidya Sreenivasan, a doctor of physical medicine and rehabilitation. Some have mild cases, but others, like Fran’s, are more serious.
A more challenging road to recovery
About one in 100,000 Canadians contracts GBS every year. Recovery can take more than a year because the nerves re-grow slowly, one millimetre per month. For Fran, the journey would be much longer.
The disease continued its nerve damage following his admission to the hospital. After two weeks, he transferred to the Rehab Centre, where his care team included doctors, psychologists, social workers, recreation therapists, physiotherapists, respirologists, occupational therapists, and nurses.
“I decided at that point, I was going to fight it. I was going to fight back and do the best I could to get better even though I didn’t know what the outcome was going to be.” – Fran Cosper
Fran was completely dependent on this team for all of his care. He needed to be washed, dressed, and turned in bed. He couldn’t even close his eyes. The nurses had to tape his eyelids shut so he could sleep.
“It was like having an out-of-body experience. I mean my brain was working fine but my body wasn’t doing what I asked it to do,” says Fran. He also faced excruciating pain because of the damage done to his nerves. As Fran lay there unable to move in his hospital bed, he made a decision.
“Oddly, I wasn’t afraid. I decided at that point, I was going to fight it. I was going to fight back and do the best I could to get better even though I didn’t know what the outcome was going to be.”
Rehab team ready with state-of-the art technology
Fran’s excellent fitness level, as well as his determination and positive attitude, helped him through when it came to the rigorous therapy plan. He had physiotherapy five hours a day, including three times a week in the Rehab Centre pool. Within two months, he could stand and take steps with help. He learned to walk again thanks in part to our Virtual Reality lab – one of only two in Canada.
Fran would visit the Rehab Centre pool three times a week.
“The pool and this 3D room were invaluable. It would have taken me a lot longer to get my legs back if I didn’t have access to those tools.” – Fran Cosper
The CAREN (Computer-Assisted Rehabilitation Environment) system combines room-sized 3D graphics, a platform that moves with the patient in a harness, as they explore the 3D world, a dual-tread remote-controlled treadmill, and world-class motion analysis technology. Preprogrammed visual presentations allow the patient to respond to an environmental stimulus by shifting weight, increasing or decreasing speed and even making specific motions. Difficulty levels can be increased gradually as the patient progresses further in their rehabilitation treatment plans.
Fran learning to walk again thanks in part to our Virtual Reality lab – one of only two in Canada.
“This room is right out of sci-fi. It really challenges your body. After an hour of doing exercises, I was just sweating. The pool and this 3D room were invaluable. It would have taken me a lot longer to get my legs back if I didn’t have access to those tools.”
“I’d basically been swiped off the planet for a year. But the only negative thing about being in the hospital was the disease itself.” – Fran Cosper
For Dr. Nancy Dudek, Medical Director, Amputee Program at The Ottawa Hospital Rehabilitation Centre, this unique system offers many benefits to patients. “There’s no end to things you can do with that sort of creativity. To be able to be hooked up to a harness without the support of the parallel bars still gives you the safety aspect. It’s a very innovative and beneficial system.”
Installed in 2010 in partnership with the Canadian Forces and with support from the community, the CAREN system was initially used in part to help injured soldiers returning from Afghanistan. Since then, many patients have benefitted, including those who have had a traumatic brain injury, stroke, neuromuscular disease, amputation, or chronic pain.
Continuing the road to recovery
Released from the Rehab Centre in October 2017, tears were shed by Fran and nurses who cared for him. It was those nurses who helped Fran with day-to-day care, teaching him how to wash and dress himself and be independent again.
Fran receiving care from the rehab team.
“I can honestly say that the kindness and level of care I got really humbled me. The nurses and staff have just been marvellous,” says Fran. “I’d basically been swiped off the planet for a year. But the only negative thing about being in the hospital was the disease itself.”
He walked out of the Rehab Centre using a walker. When he returned a month later for a follow-up appointment, he walked in on his own.
Today, Fran is back riding his bike – not quite to the 100-kilometer distances, yet, but his therapy continues. He still deals with pain, and his arms were slower to recover. His fine motor skills in his fingers are taking longer to get back to normal. As a saxophone player, he’s motivated to get his fingers working again.
“I’m kind of at the point now where I’m thinking I may be able to play again someday. I’m hopeful that I’ll be able to play my sax because my fine dexterity is improving – it’s a work in progress.”
Giving back as a volunteer
Fran will never forget two volunteers in particular who were there for him when he was being cared for at the Rehab Centre. Chris and Claude would come and take Fran for coffee and to talk. Initially, he had no idea who these blue-vested people were, but Fran quickly learned the important role they play at the hospital.
“I remember asking Chris why he was a volunteer. Chris explained to me that he had an inoperable brain tumour, and he was going to die. He told me, ‘I figured the hospital took such good care of me that I would spend the rest of my time volunteering.’ I broke into tears and decided right there I had to become a volunteer,” says Fran.
Today, Fran gives back as a volunteer at our hospital.
Pre-COVID, Fran would spend two days a week meeting patients, sometimes visiting his old room at the Rehab Centre, inspiring them about what is possible. “I remember seeing a woman in a hallway; she was on a gurney and going in for surgery – she was by herself. I stopped, leaned over, and told her it was going to be ok. Afterwards, I saw her again and she said, ‘Thank you.’”
That’s why Fran proudly wears the blue vest. He’s experienced the dark days and today, he’s happy to be able to help others when they need a reassuring voice to help them through – just like Chris and Claude helped him. He’s also grateful to be able to volunteer his time at the hospital that cared for him during his long journey to recovery.
Listen to Fran Cosper in his own words during a guest appearance on Pulse: The Ottawa Hospital Foundation Podcast.
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
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