Creative, free-spirited, business owner, and recent college graduate, Adariel Lee, of the Bronx, NY, was diagnosed with Marfan syndrome at the age of 4 when her mother noticed she was looking down at her hands a lot. At an eye doctor appointment, they learned that the connective tissue in her eye was loose, leading her to additional medical evaluations. As a result, the diagnosis of Marfan syndrome was confirmed. Adariel is the first in her family to have the condition.
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
Jasmine’s family (l-r) Mom Joanne Duffey, dad Alvin Duffey, Jasmine, sister Jawanda Duffey, and brother Jarvis Williams.
At 6’7” tall, Jasmine Duffey was one of the nation’s top basketball prospects in high school. She headed to Middle Tennessee State to pursue her dreams of college basketball, with hopes of going even further in the sport she loved. It was not to be.
Topics: Marfan Awareness, Diagnosis, Living Successfully, Quality of Life, wellness
Amy Kipnis with her family at Hill Day in 2019.
Topics: Volunteer, Marfan Awareness, Hill Day, Education
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
