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.
When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have many questions. I wanted the process to be over as soon as possible and I trusted that my surgeon, Dr. Craig Miller, and my cardiologist, Dr. David Liang, would be able to make that happen successfully.
A few years ago, while writing stories for a healthcare company, I found myself in conversation with Becca Weust, a young woman who had been diagnosed with Marfan syndrome as a child. Becca had faced many complications—heart surgery and brutalizing headaches, a collapsing sternum and deepest exhaustion—and she described them to me, for that was the purpose of my call. But Becca was so intelligent, funny, interesting, and warm, that I did not wish for our conversation to end.
On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan and related conditions are supporting The Marfan Foundation because of our impact on their lives. Liam, Peter, and Katie share how the Foundation is helping them achieve #VictoryToday.