A much-missed man and a marathon for Marfan Syndrome. Jonathan died suddenly doing what he loved - playing tennis. He left behind many friends and a family including twin children who have inherited his Marfan condition. In his memory, a group of loved ones will be walking the beautiful Northumbrian coastline. Read his story.

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In memory of Jonathan, we are walking ‘A Marathon for Marfan’ - challenging ourselves to walk 26 miles along part of the Northumberland Coast Path.

On Saturday 16th August we’ll set off from Warkworth and at some point later in the day will finish in Bamburgh.

If you would like to hear Jonathan’s story, read on….

Jonathan passed away suddenly in April 2024, a devastating and shocking loss to family, friends and colleagues. He was truly one of life’s genuine good guys. It’s cliched, but he really was the kindest person; generous with his love, money and his time; positive; witty; supportive and loyal.

Unsurprisingly we had never heard of Marfan Syndrome until Jonathan was 34 in 2006. Fed up with (what he thought were) migraines, he went to the doctors. Thank goodness the GP that day took the time to investigate the ‘heart murmur’ and refer him for further investigations. Six weeks later he underwent Aortic Root surgery and Aortic Valve replacement in Leeds General Infirmary. A few weeks later, the consultant mentioned something called Marfan Syndrome - that explained a lot! Our toddler twins were then also diagnosed with this genetic condition. (By then we were already bored of the “aren’t they tall” comments!)

Jonathan passed away last Spring from an Aortic Rupture, doing what he loved playing tennis. ‘He had so much more life to live’; we miss him with all our hearts.

Our wonderful Redcar friends then decided to take on some sort of adventure to honour and remember Jonathan. A few planning meetings later and here we are! If you would like to support us on our epic hike, please donate. Any donations will help the Marfan Trust support families and fund research into this condition. This will be a challenge physically and emotionally - your support and encouragement mean the world to us.

Thank you! Heather, Nick, Catherine, Leigh, Tony, Steve & Fiona xxxxxxxx

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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