A WOMAN from Liskeard is preparing to take on this year’s London Marathon, and she has chosen to support a charity close to her heart.

Lyndsey Saunders will be running the London Marathon 2022 in support of two year old Llewyn Sullivan and the TOFs charity. Not only is she hoping to raise to funds for the TOF’s charity but also, to spread awareness of this rare condition.

Llewyn, was born at Derriford Hospital in May 2020. After some trouble with feeding, it wasn’t long before doctors confirmed the devastating news to his parents, Rhys and Rhiannon from Menheniot, that he had been born with a rare congenital condition called TOF (Tracheo-Oesophageal Atresia) and OA (Oesophageal Atresia). This condition meant that he had effectively been ‘born unable to swallow; there was no join between Llewyn’s gullet and stomach and instead one had formed between the gullet and the windpipe.

Llewyn was blue lighted from Derriford Hospital to Bristol’s Children Hospital where at just four days old he required neonatal surgery which repaired the gap between the oesophagus and stomach and closed the join into the windpipe. After two weeks in neonatal intensive care Llewyn was able to return home.

In the months that followed Llewyn grew just like any other baby, he was a happy baby and loved playing with his older brother, Ayrton. The only signs of his TOF/OA condition were severe reflux and oesophageal dysmotility - where the muscles which control swallowing wouldn’t always work in unison meaning food would stick in his oesophagus.

In September 2021, Llewyn got food stuck in his oesophagus which turned into a full blockage of his airways - he choked on the smallest piece of food. This led to him requiring 10 minutes of CPR from his mother Rhiannon, before paramedics took over. His parents were told to prepare to say their goodbyes but, Llewyn fought and miraculously pulled through.

Following the choking incident Llewyn developed an aversion to food, his health declined with multiple infections and malnutrition meant that he failed to gain any weight. It was decided that Llewyn would have a feeding tube until he was old enough to try eating again. Unfortunately, there is no treatment for oesophageal dysmotility which is Llewyn’s biggest challenge.

Llewyn’s family have been fundraising for the TOF’s charity and to date have raised just over £2,000; they are keen to increase this figure knowing how much help the charity provides to those born unable to swallow. The charity gets no support from the government and relies on donations to continue their work providing lifelong support for those born with TOF/OA.

The family said: “We wish Lyndsey the very best of luck for the London marathon and will be cheering her on every step of the way.”

To contribute and support Lyndsey’s efforts visit www.justgiving.com/fundraising/lyndsey-saunders2