Marfan syndrome is an inherited connective tissue disorder that affects the heart, eyes, and skeleton, and requires early diagnosis and treatment to prevent serious, life-threatening complications.

We have chosen to support this charity because one of our founders has a deeply personal and heartbreaking story that highlights just how serious this condition can be.

This is Mitchell’s story.

“Micah was a seemingly fit and healthy young man with the whole world ahead of him. He was clever, determined, and talented, and was just about to begin a new chapter of his life at university.

On the 23rd of July 2020, everything changed. Micah was at home with his girlfriend, preparing dinner, when he unexpectedly passed away at the age of 19. His sudden loss tore the lives of his family and friends apart.

There were so many questions surrounding why and how he had died. At first, we had no answers. For such a fit and healthy young man to pass away so abruptly simply didn’t make sense.

Eventually, we gained some clarity. Unbeknownst to his family—and even to Micah himself—he was living with Marfan syndrome. He had carried this condition his entire life without knowing the dangerous complications it could bring.

Sadly, there are many other people like Micah who may be living with this disorder without knowing, and who could face the same devastating consequences. I have chosen this charity so I can tell Micah’s story, use his name to raise money, and help give others with Marfan syndrome the best possible chance to live a long and healthy life.