In 2008 - we had no idea what Marfan syndrome was. 

We lost someone we loved dearly, then everything changed.

About 50% of my family have Marfans. It's a connective tissue disorder than can affect the eyes, skeletal system, heart, and much more. 

The dangers it poses mainly arise in the heart, where the tissues are unable to stretch and accommodate like they would normally. 

It's incurable, and requires a lot of medical intervention. My mum had open heart surgery in 2011, countless other minor surgeries & is on a cocktail of meds. My brother, just 18, will probably require surgery in the near future too. 

My nan is mostly bionic now, which is cool.

The Marfan Trust are based at St. George's, and contribute so much to the patient care and clinical research of Marfans. Their work is invaluable to me and my family.