Sara and friends fundraiser for The Marfan Trust (Sally Anne Lisa & Claire)
Fundraising for The Marfan Trust
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November 4th 2023 myself Anne Sally Lisa and Claire will be travelling to Nepal to take on the challenge of trekking to Everest Base Camp.
We are raising money for The Marfans Trust a charity close to home after the devastating loss of my cousin’s son Jonny in 2019.
Jonathan went to a beer festival fit and healthy and never came home 😢
He was 23, he had no warning!
Jonny had a heart Aneurysm, and died instantly! 😢
Had we heard of MARFAN SYNDROME we may have been able to join the dots and he would have had a heart scan and surgery.
He was tall and thin, His rib cage stuck out ( pigeon chest) , his toes curled, stretch marks on back, able to touch his wrist with his thumb, his wing spam was longer than his height.
Other symptoms are chronic pain, curved spine, flat feet, dislocated eyes. YOU DONT HAVE TO HAVE ALL THESE SYMPTOMS! Jonny never complained of any pain ❤️
Please share my post and make MARFAN SYNDROME more aware,it could save someone’s life !