We continue our Awareness Campaign with a story tragically emblematic of the need for greater awareness of Marfan syndrome. This is the story of Wayne and Lewis. Awareness Saves Lives, as Wayne’s family all too sadly know and have worked ceaselessly towards over the last 18 years.


Wayne Johnston was a chef, a wonderful chef. At 23 years of age he was living with Tracy and had welcomed a wonderful baby son, Lewis. He died suddenly of undiagnosed Marfan syndrome when Lewis was just a few months old.  A syndrome that was previously unknown to the Johnston family had stolen their beloved boy – a son, brother, father, partner, and a friend to many. It had shattered their lives. And it has shaped Lewis’s life, for Lewis has inherited the condition.

In the wake of Wayne’s death, the Johnstons turned to the Marfan Association. Determined to prevent such a tragedy striking another family, the Johnstons became avid fundraisers, sponsoring literature to bring much-needed awareness to the public and professionals alike. Awareness saves lives, they realised. And the opportunities to diagnose Marfan syndrome exist aplenty, from dentists and opticians to A&E departments. With this in mind, the Johnstons were behind the Marfan Association booklets on Dentistry and Emergency Treatment in Marfan syndrome.

And in a personal touch the family adapted Wayne's favourite recipes into a cookbook which was printed locally in Aberdeen with many copies sent to the Marfan Association.  The sale of these cookbooks marked the beginning of a "Wayne Johnston Memorial Fund", raising over £20,000 at one time.  

Lewis is now 18 years old and his future looks bright. Awareness of his condition has meant that with medical monitoring and intervention he is faring well. He is currently awaiting aortic surgery in Scotland but is otherwise healthy and, after just passing his driving test first time, very happy!


Thank you to the Pam, Ivan, Lyn and Lewis Johnston for sharing your story. And thank you to Marian Mason for being such an invaluable trove of information.


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The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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