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

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

The Amateur EMT - By Brian Latimer
Alex started crying telling me his shoulder hurt; then his jaw hurt; then it was his back. He immediately broke into a sweat and we knew something was seriously wrong. In the back of my mind there was a story I’d read in the GADA Newsletter describing the symptoms of an aortic dissection and the intense, non-localized pain that resulted from it. We rushed Alex to Bowmanville Hospital where he was kept under observation until an Ambulance could arrive to take us to Sick Kids...More

Katy Hornsby & Family - Marfan syndrome & Other Mutation
“Knowing that GADA is working to improve care and support for people with Marfan syndrome, as well as those with genetic aortic disorders, brings me great hope for the future of my family's health”…More

Nicola Canta - Unknown Mutation
“Until the role of GADA in deciphering and highlighting the distinctions in aortic disorders, I felt as though I was living under an umbrella of fear”….More

Ulyana -MYH11 mutation
“GADA’s program to support the MAC international registry research is extremely crucial to keep medical professionals updated of the many new gene mutations that cause fatal aortic disorders.”…More

Nevaeh - TGFBR2 Mutation (LDS2)
"Sandra’s grand-daughter, Nevaeh was diagnosed with  TGFBR2 mutation (Loeys-Dietz syndrome), which in her case, is random with no familial link. Sandra is currently on the Board of Directors for GADA Canada and remains dedicated to fostering awareness and being a supportive advocate to several members of the LDS community in Canada”…More

Lisa & Lauren - ACTA2 Mutation
“We need to continue with research efforts to help us understand ACTA2 and other genetic aortic disorders better. They are complex and multi-systemic but most of all, they can be deadly. Please help to improve the odds by contributing to the efforts of GADA Canada to support research and promote knowledge of aortic health among our community”…..More

Noelle Beer - Marfan syndrome
“While we try to teach our children all about life, our children teach us what life is all about." - Unknown...More