Testimonials and Stories

Claire (McHenry) Dion, sister of  Elizabeth McHenry (CMA Founder), endorses "the evolution of the Canadian Marfan Association (CMA) to GADA Canada; to include research, awareness and treatment for other genetic aortic disorders. This progress is encouraging and visionary. A heartfelt 'thank you' to all the members of the GADA team, as well as the many professionals and others who work tirelessly to continue the research, education and appropriate treatment for those affected by these disorders. The best of success in your new endeavours." Read more about our Founder

Scroll down to read the inspirational stories of our members. If you would like to share YOUR story, please click here

Sunshine Saved My Life

The morning after my due date - a Saturday, I jolted awake. Something was very wrong in my womb. What followed was a journey from happily pregnant to needing emergency aortic surgery, the loss of my baby, and discovering I had an aortic condition I knew nothing about. Read More

The Pain and Joy of Living with Marfan syndrome

GADA have connected me to the experts I have needed to manage my care and given me a sense of community where I don’t feel so different from others. Read More

GADA Is Here To Help! Jim's Testimonial Explains How GADA Has Helped In His Journey

GADA is an integral and invaluable part of the management of genetic aortic disorders for patients like myself and their families. It’s more than worthy of my ongoing support…Read More

Aortic surgery in a pandemic: How this GADA member thrived!

In the midst of a pandemic, many of us have had to figure out how to deal with non-COVID health urgencies and emergencies. This was the case for me. 2020 was not only the year of COVID, but also of my first open heart surgery.

My thoughts were dominated by one question when I was told of the need for surgery ASAP: Now? Now you want me to have this surgery, while the health system is stretched to its brink fighting off a fatal virus?

For those of us with aortic disease, timing is everything. Timing is the difference between an easy recovery and a difficult one. It’s the difference between a relatively problem-free future and one filled with surgeries and elevated risk of early death. It is the difference between life and death itself. This was something I understood. I got straight to work getting myself prepared for surgery… Read More

Awareness is so important to help save lives!

Janna Klostermann, a Canadian storyteller, shares her diagnosis of Marfan syndrome as an adult. Read her poignant and insightful essay published in The Globe and Mail. Click here

Connections Help Build A Stronger Community
Mother’s intuition is a powerful thing. It can sometimes sense things a scientific mind may not make sense of right away. This is the story of my 7-year-old daughter Hanna, and her diagnosis and journey with Marfan syndrome.

The resources provided by GADA Canada and the Marfan Foundation have been extremely helpful. I have benefited greatly from the patient and family conferences both organizations have held in Canada and the U.S. These conferences have allowed me to learn about the latest research and ask the experts my questions. I have always left feeling hopeful and excited for Hanna’s future. These organizations have also allowed me to connect with other parents and people living with connected tissue disorders. I find these connections priceless as I try and navigate Hanna’s appointments and any issues that arise…More

Importance Of Family Genetic Testing - Jill Valer
The night of December 10, 2014, I had just gone to bed and was awoken with a sharp pain in my jaw which went right down my left side.  My leg felt like it was asleep until eventually it was a dead weight and I couldn’t walk. I was rushed by ambulance to my local hospital in Richmond Hill.  I had suffered an acute aortic dissection and was immediately transferred to Sunnybrook Hospital for emergency surgery. I am lucky to survive the aortic dissection!... 
All of this is so new to me and my family. I am grateful there is a group like GADA to gain insight and knowledge about aortic disorders....More

Lessons From A Little Fighter - Felix Reeves
When Felix was 8 weeks old, he woke up screaming and he was extremely pale. His pediatrician informed us that Felix’s heart rate was very rapid, at around 230 bpm, and rushed him to Alberta Children's Hospital. It was a terrifying afternoon, we weren’t certain if we were going to get out of the hospital with our baby!...
Genetics and medical research are changing the management and treatment approaches of infants with neonatal Marfan syndrome. We must keep looking forward to a future these kids will enjoy...More

Handling It Like A Champ - by Jennifer Wallace
In the middle of the night, the doctor woke me with the news that Tyler had to be rushed to Sick Kids for cardiac surgery. I tried to get out of bed, but was too weak and in too much pain. I never got to hold him or even kiss him goodbye. I called Eric and told him he needed to get to Sick Kids to meet the doctors immediately. Neither of us knew what to expect. More