“If only I’d known” is sometimes the saddest phrase of all. Jonathan "Jonny" Edwards displayed the typical hallmarks of Marfan syndrome but it went undiagnosed and he died at just 23.“Jonny was tall and thin, his rib cage stuck out (pigeon chest), his toes curled, he had stretch marks on his back and he was able to touch his wrist with his thumb. His wing span was longer than his height. Had we, or the doctors, heard of Marfan syndrome, we may have been able to join the dots. Jonny would have been tested, and probably undergone surgery. He would probably be alive today.” 

As a child ‘Jonny’ had a bad chest and asthma. At 16 he spent time on the Ear Nose and Throat Ward of his local hospital, recovering from an operation on his ear which antibiotics had failed to clear up. The ward was one that treated Marfan patients, yet Jonny remained undiagnosed during his stay while his condition hid in plain sight.Jonny’s mother, Elizabeth, has said: ““I don't ever want another mother to feel like I do and if I could save one life I would give my right arm." Elizabeth tirelessly raises awareness in memory of her son, a popular chip shop worker who died during a beer festival in Penclawwd. His cousins, Liam, Caroline and Hannah do the same. They have climbed mountains and performed many amazing feats in his memory.

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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