Although I am a private person, it is important to share my story, given how vital the University of Ottawa Heart Institute is for families like mine.
My youngest son, Danny, was born with a rare congenital heart disease called Hypoplastic left heart
syndrome. The left side of his heart could not pump blood. My wife Amanda and I were informed during pre-natal screening and had an action plan for his early treatment that was to include three
surgeries and a possible heart transplant.
Tragically, Danny’s medical journey took a turn for the worse, and he passed away at less than two years of age. My family and I went through a wide range of feelings, like the many stages of grief,
including denial, anger, hopelessness, and deep sadness. That was almost seven years ago.
Although therapy can help with the darkness tragedies like this bring, I needed to get busy and feel useful, so I devoted my time and energy to service.
A friend reached out to me during those dark days and asked if I would consider volunteering my financial expertise as a volunteer director at the University of Ottawa Heart Institute Foundation.
Without hesitating, I said yes. I was grateful and excited to see how I could help. I realized this
incredible opportunity to give back to my community could also be a way to honour my son’s memory.
Volunteering was crucial in helping me keep my head above water.
The Ottawa Heart Institute is here when your family needs it most. Would you consider giving a gift to support innovative treatment and care today?
Your donation will help patients receive the best possible care, especially when they are faced with the reality of rare and complex cardiac conditions.
Little did I know then that another life-altering experience of rare heart disease would bookend my life. My dad, Peter, would develop a serious and rare heart problem, too.
About three years ago, my dad had an urgent update for me:
“I have news…not good news,”
He said. Hearing those words, I felt a pit of fear in my stomach.
It turns out my dad had just received a diagnosis of Cardiac Amyloidosis (“stiff heart syndrome”). His doctor had mentioned that he may have just 12 months to live.
As a family, we were in a race against time. After some testing, our first stop was the Heart Institute. We had faith in the team of cardiologists, surgeons, specialists and researchers.
As it turns out, the Heart Institute has a particular program for amyloidosis. My dad was prescribed a new type of medication, received additional treatment, and has essentially left the disease behind.
Three years later, he enjoys every moment and recently endeavoured on a six-week hiking trip in Norway. He is thriving at 77 years of age.
If my son Danny had survived to adulthood, one day, he would be receiving world-renowned treatment for his heart condition here at the University of Ottawa Heart Institute, too.
I feel good knowing I am helping countless other families receive the gift of time.
When I started volunteering at the Institute, I never expected that it would help to save my dad’s life. The Institute’s unwavering commitment to innovative research and treatment for various cardiovascular conditions and rare and harder-to-treat ailments is a beacon of hope.
Last year, the Institute formed the Canadian Centre for Rare Cardiac Conditions (CCRCC).
Dr. Ian Paterson, the Centre’s director, and hear from Guy, a recent patient.
The CCRCC will help save thousands of lives and support future generations.
Rare diseases or conditions occur in less than five out of 10,000 people, and over 7,000 have been identified. Yet, if we zoom out, that means that one in twelve people in Canada experience a rare disease. Rare diseases are then far more “common” than you’d think.
A rare cardiac condition may decrease a person’s quality of life and can even be life-threatening. However, many innovative and effective treatments have emerged in the last decade.
I am proud of the Institute’s work. All the Directors are collaborative and committed to our mission. It is a place of excellence and healing made even better by the great work of many leaders like
Dr. Thierry Mesana and now Dr. Rob Beanlands. Together, we are part of an ongoing evolution of cardiac care, impacting the longevity of those we love.
Family is everything to me. Amanda and I proudly named our first-born son Pete after my father, Peter Sr. Pete was three years old when he lost his little brother Danny. It’s a loss we all still feel in our own way. I am reminded to keep each other close. We will cherish our time together as a big, bustling extended family with my dad this Thanksgiving.
In our hearts we know that Danny is at the table with us as we create new memories.
Sincerely,
James Annis
Board Chair, University of Ottawa Heart Institute Foundation
P.S. Our family’s story started with heartbreak. Now, through the work of the Institute and the Foundation, I found purpose. My dad has more time, and we all support the forefront of treatment and research for rare cardiac conditions.
Please consider donating any amount to support our work to help other families make more memories and celebrate holidays together.
