The title of the new Netflix musical Tick Tick …BOOM denotes the mounting impatience felt by its creator, Jonathan Larson who is in a race against time to succeed on Broadway. On the brink of turning 30 he is balancing love, friendship and a job waiting tables in New York, all while in hot pursuit of artistic success before it’s too late and the world blows up in his face. Jonathan Larson eventually achieved global acclaim but posthumously for he died of a misdiagnosed aortic dissection and undiagnosed Marfan syndrome in 1996, just before his smash-hit musical Rent opened. 

Tick Tick … BOOM is his autobiographical tale now streaming on Netflix as a magical musical with Andrew Garfield. Larson had twice visited hospital emergency departments with chest pain, but been turned away. He died alone on his kitchen floor. February marks Marfan Awareness Month during which we will raise awareness amongst the medical profession of Marfan syndrome and Find the Missing 15,000. With 3,000 Marfan folk known to our charity, we estimate there are a further 15,000 in the UK unknown to us and their condition unknown to some of them. There's a life-threatening gulf between early and late diagnosis.

On 29 April 1996, the rock musical Rent opened on Broadway, winning immediate critical acclaim, six Tony Awards and the Pulitzer Prize for Drama.  But its creator Jonathan Larson was not present on opening night to soak up the applause or revel in the praise. Nor could he take to the stage months later to accept his much-deserved Tony and Pulitzer awards. For he had died alone in his apartment on the eve of his musical’s off-Broadway premiere of an aortic dissection.  

Prior to this he had sought help for chest pain at two New York City accident and emergency rooms. Doctors at the first attributed his pains to food poisoning. A few days later, at a second hospital, he was told he had the flu. No one had diagnosed that he had a heart defect caused by Marfan syndrome. On January 25, 1996, he died after an artery carrying blood away from his heart enlarged and ruptured. He was 35.

The Marfan Trust is registered in England and Wales under charity number 328070 at c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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