Amy Kipnis with her family at Hill Day in 2019.
The broad goal of Marfan awareness is about seeing the complete person behind the diagnosis. My personal journey with Marfan awareness could be more accurately described as a journey towards Marfan acceptance.
When my daughter, Gabriella, was diagnosed with Marfan syndrome at the age of five our family was forever changed in ways that were unexpected. There was a feeling of relief that finally came with having an answer for Gabriella's health issues. There was a feeling of fear as we stared in the face of this rare condition that we knew absolutely nothing about, and that was now embodied in our daughter. And there was also a feeling of isolation not knowing anyone who understood what this was all really like for us. Our younger child, Nicholas, was only 18 months old at the time. He is the best brother to Gabriella and her number one protector.
I was born the day before my due date and I was perfectly healthy. I was 9lbs 3oz and almost 22in long, which surprised my parents! My parents say I was the perfect baby. I slept through the night and ate like a champ, though I had issues with acid reflux.