Mr. Speaker, I rise today to share the story of my constituent Kerry-Anne Hall, who suffered a tragic loss. Her daughter, Kathryn Ellen Pryla, was just 28 years old, and eight months pregnant, when she died suddenly from an aortic dissection. Her baby boy, Callum James, did not survive.
Only after Kathryn’s passing did genetic testing confirm she had Marfan syndrome, a connective tissue disorder. From the age of three, she was under specialist care for scoliosis, eye complications and other related issues, yet each was treated in isolation. No one recognized the larger pattern that could have pointed to Marfan sooner.
Kathryn’s story reminds us of the importance of seeing the whole picture and of ensuring that our health care systems, professionals and researchers have the awareness and tools they need to identify rare genetic conditions early. Greater collaboration, education and research can save lives.
We owe it to families like Kerry-Anne’s to raise national awareness of genetic aortic disorders and to make sure no one else is lost because the signs were missed.
