Nick (front) and Connor in July 2020
On the morning of December 3, 2020, Nick Metz, a 16-year-old in California, was schooling from home like most kids in the US when I pulled him to rush to the hospital. His 13-year-old brother, Connor, had been taken to the ER earlier in the morning to address what we thought was merely a back ache.
Topics: Marfan Awareness, Diagnosis, Loeys Dietz, Children and Marfan
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.
Topics: Marfan Awareness, Marfan Community, Quality of Life, Children and Marfan
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.
Topics: Marfan Community, Children and Marfan
