A poignant anniversary and a rush of memories. It is 21 years ago that Wayne Johnston died of an aortic dissection, leaving a family bereft. His legacy lives on in his wonderful son Lewis, and his cookbook, Zest for Life.

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 21 years old and his future is bright. Medical awareness of his condition meant that he monitored carefully throughout his childhood and he underwent the David Procedure at Glasgow Hospital to repair his aneurysm. He has recovered well and is studying for his university degree.

The Marfan Trust has republished Wayne's Cookbook.

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 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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