The Marfan Blog

Marfan Moms: The Ultimate Support Group

Feb 23, 2021 by Heather Earnhart

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

Fierce Compassion: Becca Weust and the Stories She Tells

Apr 6, 2020 by Beth Kephart

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

Reflecting on Awareness

Feb 19, 2020 by Allison Pullins

Topics: Volunteer, Marfan Awareness, Children and Marfan

Jimmy's Magic Turtle

Feb 6, 2020 by Cynthia Lee De Boer

Topics: Marfan Awareness, Marfan Community, Children and Marfan, Neonatal Marfan