Growing Up with Marfan Syndrome: A Brother's Perspective

Quietly watching his sister navigate a chronic health condition has shaped Henry’s understanding of human resilience. Henry is 14 and his younger sister Isabella has Marfan syndrome. Together they've devised safe and creative ways to play that will not put her at risk. Henry has since volunteered his many skills to the Marfan Trust, and during National Volunteers' Week we would like to publicly thank him. Do read his wonderful article, Growing Up with Marfan Syndrome: A Brother's Perspective.

Hi I’m Henry Odong and my sister has Marfan syndrome.

Marfan syndrome is a genetic disorder that affects the body’s connective tissue which is basically the "glue" that holds everything together. Because connective tissue is found throughout the body, the condition can affect many different systems, including the heart, eyes, joints, and skeleton.

Watching my sister navigate life with Marfan syndrome has been eye-opening as it has taught me a lot about resilience, family, and what it truly means to be supportive.

The Balancing Act of Daily Life

One of the hardest parts of watching a sibling live with Marfan syndrome is seeing the limitations it can cause, Because of the risk of aortic enlargement (a bulge in the aorta, the biggest artery), contact sports and heavy lifting are off the table. As a brother, you want to protect your sibling, but you also want them to experience everything life can offer and make it fun.

We had to find new ways to have fun. Instead of high-impact activities, we focused on things we could do together like drawing and more creative things.

Strength that you would never see

If you looked at my sister, you might just see someone who is tall and slender. You wouldn't necessarily see the eye specialist appointments, or the daily fatigue that can come with the condition.

What I like most about her is her quiet strength and how she handles things. She doesn't let her diagnosis define who she is. She perseveres through it. Instead, it’s just one part of her story. It’s a part that has made her incredibly resilient, empathetic, and mature beyond her years which as a brother I’m very proud about.