Our Stories
The people who let us share their stories allow us to see a human face on the fight against disease. They are able to talk about their own or the struggles faced by their loved ones. These are just a fraction of the people whose lives are touched by our member organizations.
The following are stories from people across Canada.
Heather - Cystic Fibrosis Canada
I was born with cystic fibrosis, a disease that makes me cough a lot and makes it really hard to breathe. To get rid of mucus in my lungs, my mom or dad has to pound on my chest for 20 minutes at least twice a day. I hate when I get chest infections, because the therapies hurt more and I have to take a medication that burns my throat. I also take a handful of pills with every meal and snacks to digest the food I eat....
Alain - Parkinson Society Canada
An athlete at heart, Montreal native Alain Garceau was once training as a cyclist, for the 1980 Summer Olympics in Moscow. He was used to an active lifestyle with plenty of skiing, running and playing hockey. The year he noticed a decline in his athletic performance while skiing at Salt Lake City, he knew something was wrong.
Within six months of his initial symptoms, Garceau was diagnosed with young onset...
Danielle - Muscular Dystrophy Canada
Danielle Campo is the National Ambassador for Muscular Dystrophy Canada and knows what it takes to achieve goals. Only 26 she has achieved more than most of us will accomplish in a lifetime. Danielle brings that hard work and dedication to Muscular Dystrophy Canada as an Ambassador.
At the 2000 Paralympic Games in Australia, Danielle won a stunning three gold medals and one silver in freestyle swimming. That...
Nikki & John - The Kidney Foundation of Canada
After some routine tests came back showing abnormalities, 6 months of further tests led to my husband being diagnosed with Alport Syndrome in December 2009. It came as a complete shock as he was relatively healthy!
About a month later I heard about the Kidney March, an event organized by the Kidney Foundation of Canada to raise money and awareness. I’m not sure we really thought about the fact that we were...
Andrei - Multiple Sclerosis Society of Canada
Multiple sclerosis is an unpredictable illness, affecting vision, hearing, memory, balance and mobility. Canada has one of the highest rates of MS in the world. The impact is felt by family, friends and by the community. There is no cure.
Andrei Sedoff has a rich history with the MS Society. In addition to receiving an MS Society scholarship in 2008, the well-spoken youth ambassador has addressed top...
Robert - Canadian Liver Foundation
A New Beginning
Robert Morin is counting his blessings for his new lease on life! In February 1988, needle-like pain overcame his body to the degree that he could barely walk home from school. Blood work ordered by his family doctor revealed an abnormality with his liver and a further multitude of tests confirmed that he was suffering from an auto-immune hepatitis.
For several years medication allowed...
The Gray Family - Canadian Hemophilia Society
Benjamin and Nathan, both have severe hemophilia A. The first diagnosis of hemophilia was shocking and devastating to Victoria and Darryl who, by then, were expecting their second child. They knew nothing about hemophilia and were very scared. At first, their dreams for their son were crushed. But little by little, working with the health care team at their treatment centre and reading as much as they could about...
Hailey - Canadian Diabetes Association
November is DIABETES AWARENESS MONTH!
Hailey Schurko, was just 7 when she was diagnosed with type 1 diabetes.
Now 13, this grade 7 student at Dawson Trail School in Lorette, MB, leads an active life and manages her diabetes with a positive, can-do attitude.
Along with the steadfast support of her family and friends, some of Hailey’s greatest learning and life experiences with her diabetes have...
Geralyn - Canadian Cancer Society
Benefitted from a discovery made by a Canadian Cancer Society funded researcher
It was a relatively simple blood test that changed Geralyn Hansford’s life. In 2005, the test showed that she carried the genetic mutation for one of the deadliest types of stomach cancer.
Geralyn was devastated and made the only choice that would save her life. She had her stomach completely removed.
Today, the...
Elaine - The Arthritis Society
Arthritis can strike anyone at any time. Just ask Elaine Alec, who was diagnosed with rheumatoid arthritis (RA) at the age of 22. The onset of her RA led to months of pain so severe she often could not get out of bed, dress herself or take care of her child. “Living with arthritis can be lonely, scary and devastating,” the Penticton, B.C., native recalls. “At my worst, I wondered whether it was worth carrying...
Bill - Alzheimer Society of Canada
At 55 years old, Bill Heibein received a diagnosis of Alzheimer’s disease. He was struggling in his job as a public accountant – missing meetings, forgetting names, and losing his train of thought. “I was angry”, says Bill of the diagnosis, “and I wasn’t looking forward to everything they said was supposed to happen with the disease. I was told that with my early diagnosis, based on average, I could expect...
Alison - ALS Society of Canada
ALS is a physically, emotionally, and financially devastating disease that robs a person of their life, one muscle group after another.
Never one for sitting still, Alison loved running, laughing, hosting parties and drinking good wine. This accomplished pianist, elite athlete, respected teacher, choir leader, musical director and mother of two beautiful boys began feeling twitches in her arms in the summer of...
Linda - Canadian Diabetes Association
November is DIABETES AWARENESS MONTH!
Linda was diagnosed with type 2 diabetes in the fall of 2009. She had to learn and adapt fairly quickly to a life change with regards to what she ate and how to prepare foods.
“Being a ‘newbie’ to diabetes, coupled with the fact that I have always tried to be proactive; the first thing I did was attend a ‘lunch ‘n learn’ session held by the Canadian...
Noelle and Cael - Cystic Fibrosis Canada
Cael had a better start in life thanks to newborn screening.
Cael was born on July 9, 2008. I remember the day the nurse came to do the blood test that screens infants for serious, often life-threatening disorders, which are not always apparent at birth. I never imagined anything could possibly be wrong with a baby who looked so healthy on the outside.Two weeks later, the doctors told us that Cael had...
Liz - Heart and Stroke Foundation of Canada
Liz Oberholtzer was walking her two greyhound dogs one winter morning before work and felt a burning sensation in her upper chest. Although an unusual sensation, she really didn’t give it much thought – after all, it was cold out and she was walking briskly. Soon after, she noticed that, while climbing the stairs at the bank where she works, she became breathless.
A month or so later she awoke to feeling weak...
Jim - Alzheimer Society of Canada
Less than 25% of Alzheimer cases diagnosed in Canada
Early diagnosis key to treatment and supportThree years ago, Jim Mann, (a former airline employee who had travelled the world) froze in the middle of a small regional airport. He had no idea where he was, or what to do next.
Later, he got lost in his own neighbourhood. Then he drove his wife on a routine trip to the drugstore and blanked on how...
Melanie - ALS Society of Canada
ALS is a physically, emotionally, and financially devastating disease that robs a person of their life, one muscle group after another.
Melanie was an active person passionately engaged in life before her diagnosis in September 2008. An avid traveler, Melanie also loved to scuba dive, read and cook. She was an award-winning television producer at YTV. All of that is now gone, but she remains hopeful that one day...
Jeremy - Canadian Hemophilia Society
Jeremy was determined to walk again. Born with severe hemophilia he developed an inhibitor whereby his body rejected the medication he needed to stop his bleeding episodes. He suffered bleed after painful bleed in his joints. By the time Jeremy was six, his legs were so crippled he could no longer walk. Then in 2000, when Jeremy was 9, he and his family attended the first-ever weekend for families affected by...
Jessica - Multiple Sclerosis Society of Canada
Canada has one of the highest rates of MS in the world and women are three times more likely than men to develop the disease.
Jessica Sanftleben, a Saskatchewan MS Read-A-Thon participant exemplifies the valuable contribution youth make in the movement to end MS. Motivated by her mother’s diagnosis, Jessica remains positive and determined to make a difference.
Through hard work and devotion, she...
Tammy - Parkinson Society Canada
When Tammy Taylor’s children were little, one of the books she read to them was titled, My Mommy has PD ...But It’s Okay. Her daughter was two and her son not quite four when Tammy was diagnosed with Parkinson’s disease.
Now 11 and nine years old, Tammy’s children are well attuned to the ups and downs of Parkinson’s. According to Tammy, “A good day is when I can get up in the morning and feel great...
The Hoddinott Family - Canadian Cancer Society
Tremendous strides in cancer research in a single generation
“Thank you for saving three of my children’s four eyes.” – The Hoddinott Family
In the 1960s, Terry Hoddinott of London, Ontario lost his sight to retinoblastoma, a rare form of eye cancer that attacks the retina of infants and young children. Today, Terry and his children are living proof of the progress we are making in the fight...
Tom - Canadian Diabetes Association
Tom was diagnosed with diabetes in 2004. When told he had diabetes, he decided to do something about it. Not wanting to have to take more pills on top of the ones he was taking for his existing thyroid and heart condition, he read as much as he could about the disease, most of it provided by the Canadian Diabetes Association. In nine months, he had managed to take off at least 34 kilograms and 25 centimetres off his...
Pamela - The Kidney Foundation of Canada
An estimated 2 million Canadians have, or are at risk for, kidney disease. When kidneys fail, immediate treatment is needed to survive.
“At the age of 21, I was told that within 6 months to 6 years, I would require a kidney transplant. Within 3 months, my kidneys failed and I received a living organ donation from my mother ; but a blood clot formed, causing rejection. I went on home dialysis and 1 1/2...
Jennifer and Taya - Canadian Liver Foundation
When her newborn daughter Taya was diagnosed with biliary atresia (a condition resulting in blocked bile ducts leading to severe liver damage), Jennifer and her husband were shocked and devastated. Feeling helpless watching their tiny girl undergo procedure after procedure, they realized that this was a fight that the whole family would need to take on. “We decided it was time to stop crying and try to do something...
Danielle - Muscular Dystrophy Canada
Danielle Peers is best known as a tour de force in wheelchair basketball, collecting a Paralympic bronze medal in Athens in 2004 and a gold at the 2006 world championships among other milestones, such as playing pro wheelchair basketball in France.
She is currently chasing her Ph.D. at the University of Alberta, pursuing a passion for film making and building an accessible eco-house with her partner Melisa...
Ray and Liz - Huntington Society of Canada
Ray Bailey knows all about Huntington Disease, his wife Liz is in the advanced stage of this devastating neurological disease for which there is presently no cure.
Huntington disease (HD) is an inherited brain disorder that causes cells in specific parts of the brain to die. It is a genetic disorder affecting one in every 10,000 Canadians, but one in every 1,000 is touched by HD in the form of a caregiver,...
Catherine - The Arthritis Society
September is Arthritis Month
Before being diagnosed with rheumatoid arthritis (RA) at the age of 36, Catherine was a successful entrepreneur and shared a happy life with her family. As the pain and fatigue of her disease set in, the life she loved so much and her plans for the future fell apart.Catherine’s experience with The Arthritis Society began with a call to its 1-800 Information...
Kirsten - Crohn's and Colitis Foundation of Canada
Thirteen – finally a teenager! For Kirsten, though, turning 13 was the beginning of an exhausting battle against complications from Crohn’s disease.
While her friends spent the summer swimming, biking and doing other things teens do, Kirsten was hospitalized with abscesses in her small intestine. Before surgery to have 20 cm of her small intestine removed, she was able to come home briefly, but only with...
Carla - Huntington Society of Canada
When Carla’s father was diagnosed with Huntington disease (HD) in the early 1980s, it came as a huge shock to the family. None of them had heard of this fatal neurological disorder that slowly takes away a person’s ability to walk, speak, remember and even swallow.
Watching her dad deteriorate was very difficult, Carla recalls. Making it even worse was the knowledge that she had a 50 per cent chance of...
Keith - Muscular Dystrophy Canada
Keith life is very full. He recently graduated from the University of British Columbia with a Bachelor of Applied Science Engineering Physics with distinctions and a minor in Commerce. He’s now back working in Montreal but already looking forward to travelling the world.
Though he might sound like a typical 24-year-old, Martin is far from it.He was first diagnosed with Facioscapulohumeral Dystrophy...
Johnson and Kendra - Canadian Diabetes Association
For 41 year-old Johnson John of Ottawa, the path to good health has been an extraordinary journey.
"I became aware I was Type 1 (insulin dependent) diabetic in my mid-teens, but like so many people, kind of brushed it off. Moving from PEI to Ottawa in my early twenties, I continued to live a life in which I didn’t really consider the long-term consequences at all. Hey – I was young, I was in shape -...
Vincent Richer - The Arthritis Society
For Vincent Richer in 2003, increasingly morbid obesity combined with osteoarthritis had become a prison sentence, a frightening trap in which this forty three year-old, 410 pound man was barely able to walk, no longer able to use public transit, and had resigned himself to spending his life in the confines of his bedroom.
Burdened by overweight symptoms most of his life, this prolonged downward spiral had very...
Trisha Nagpal - Canadian Liver Foundation
"It is a loss that you must bear every day. It is a loss that flashes back every morning and every night when you go to sleep… the memories don’t go away easily."
To lose a child is tragic – to lose a child with no real warning, a child who had seemed in perfect health, poised on the threshold of a promising future, is even more heartrending.
In March of 2005, Daljit and Kamal Nagpal’s second...
Marie-Eve Chainey - The Kidney Foundation of Canada
Ms Marie-Eve Chainey was eighteen years old when she was in Spain participating in track and field competitions where she developed a blood disorder that made her kidneys stop working. Kidney failure can strike anyone at any age. It is estimated that 1.9 million Canadians have chronic kidney disease.
“I was always very healthy and in good shape so I didn’t pay much attention to the fact I was gaining quite a...
HERB DURAND - The Parkinson Society of Canada - Parkinson Society Canada
Herb and Ann Durand howl with laughter as they reminisce about the time Herb tipped the canoe on a family camping trip. They recall paddling across the lake when Herb’s arms started to jerk, putting the boat off balance and spilling them into the water.
“I looked like a windmill,” Herb says. “It was quite funny.”
The couple say laughing is what gets them through the hard times since Herb was...
JENNIFER & TOM HALL - Alzheimer Society of Canada
The dance of Alzheimer’s disease – one couple’s story
Jennifer Hall likens marriage to a dance in which your partner anticipates and responds to your moves – even the mundane ones. But when your partner is a vibrant man barely in his 50s who forgets the choreography because he has Alzheimer’s disease, the dance comes to a shocking end.
“Tom would go out and start the car and I would switch...
NIK HARRIS - The Arthritis Society
“Imagine if you were constantly in pain,” says Nova Scotia native Nik Harris. “I was diagnosed with juvenile idiopathic arthritis when I was about 22 months old. Since my diagnosis, my arthritis has progressed to both of my wrists, knees, and ankles.”
Nik’s story is a reminder that arthritis can strike at any time. It’s not just an “old person’s” disease. That’s why Nik is committed to...
STEPHANIE HERMSEN - Canadian Cancer Society
See the difference a generation makes
When Stephanie Hermsen was nine months old in 1976, her mother suddenly noticed a white spot in one of her eyes. Two days later, Stephanie was diagnosed with retinoblastoma – a rare form of eye cancer. Stephanie underwent nine months of radiation, chemotherapy and cryotherapy. Although treatment was successful in her left eye, in the end, her right eye could not be...
CHERI - Huntington Society of Canada
“A Part of Our Family” - Cheri's Story
I remember the first time I heard about the Huntington Society of Canada. It was September 1, 2006. Bob and I were sitting in a room at University Hospital in London, Ontario, getting the results from Bob’s blood test. I didn’t realize then how much our family would come to rely on the HSC from that day forward.
Corey, our HSC support worker, has been a...
