Rory died tragically at just 28 years old from sudden aortic dissection relating to Loeys–Dietz syndrome. Misdiagnosed with Ehlers Danlos Syndrome at age 14, Rory gradually discovered that it wasn’t the right fit for his complex symptoms. He fought for the right diagnosis and even paid privately for genetic testing which led to his formal diagnosis of Loeys-Dietz at the end of 2022.

Loeys-Dietz is a rare connective tissue disorder with features similar to Marfan syndrome and Ehlers-Danlos syndrome. It was discovered just 18 years ago and much more research is needed to help those managing with the condition. 

There is currently no UK charity directly supporting those with Loeys-Dietz (although we encourage you to visit the American site www.loeysdietz.org if you would like to read more about the condition). We have therefore chosen for donations to be made in Rory’s name to The Marfan Trust. The Marfan Trust is a UK charity that provides medical research into Marfan syndrome (and its differential diagnoses) to support those with the condition and raise much needed awareness.