Hi my name is Allison. I was diagnosed with Marfan syndrome when I was 15 years old after my older brother had open heart surgery for an aortic root repair. Out of five siblings, four of us have Marfan syndrome.
I was recently reading a book called How to Live a Good Life by Jonathan Fields (which I highly recommend). In one of the chapters, he asks the question:
About six months ago, I made the decision to “retire” from my career as a full time nanny at the ripe old age of 27. I didn’t make that decision because it was time to move on, or because I was just so over being a nanny - quite the opposite in fact. I retired because my body could no longer keep up with the kids I cared for. I retired because Marfan syndrome wasn’t going to let me do the work I loved any longer.
Blake and I met in high school. When I went to his high school graduation, I met his mom and dad. I made a comment about how tall he was while his parents were so short. That’s when I learned that his dad was there with his step-mom; Blake’s own mother died when he was eight years old from complications of Marfan syndrome.