In Memory of Jonathan
A marathon for Marfan syndrome
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 led by Leigh Waller walked the beautiful Northumbrian coastline. Read their story.
by Leigh Waller
We did it!! What a day.....Saturday 16th we set off from Bamburgh and 9.5 hours and 26 miles later, arrived at Warkworth! Had a couple of breaks on the way but in the main just kept going. A few aches, pains and blisters for some but it didn't stop us.
The weather was perfect and the route was stunning. We were stopped a few times on our way with folk asking ' what is Marfan?'. If they all went home and googled it or checked your website then that's what we aimed to do...raise awareness. We even had a couple make a donation on the day after talking to us....how amazing!
Our target of £1000 has been absolutely smashed and we are delighted it has exceeded £3000....maybe even still with a couple more to be made.
I have attached some pics for you to share and have many more should you want them.
It really was a lovely (tough) day but our support for each other and love for Jonnie kept us going.
All the very best to you and the Charity.
[Pictured: This photograph is of Leigh and her Marathon Team at the start of their long 9.5 hour journey. From left to right: Steve, Fiona and Cath (childhood friends of Jonnie), Emma (Jonnie's sister), Heather (Jonnie's partner), Leigh and her husband. And Reggie the Dog.]
In memory of Jonathan, we walked ‘A Marathon for Marfan’.
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
Over nine hours and 26 miles later, here is Leigh and the team celebrating the completion of their marathon in Warkworth. On the far left in black was Jonnie's best friend, Nick. Nick was our support vehicle and ensured we had food, water and lots of moral support.
