I’m running the London Marathon 2023 for Tracheal-oesophageal fistula support, a charity that has been a huge support and source of information with the condition that my daughter was born with, where her oesophagus wasn’t connected to her stomach, but was joined to her wind pipe for which she needed surgery at 2 days old, and nearly 2 weeks in neonatal intensive care.
Although the surgery went well, Ellie still struggles to eat lots of types of food, she has needed many hospitals stays when food has become stuck, she has needed to have the part of her oesophagus stretched as the repair doesn’t grow the same as the rest. And has trouble swallowing food and with reflux, she restricts what and how much she eats as a result. This also results in high levels of anxiety at meal times.
TOFS support and advice parents of children born with these types of condition at a time that can be overwhelming and confusing, as well as adults who have grown up following surgery to correct these problems.
They also fund ongoing research into the causes, and the best ways to treat the whole person, not just from the surgery but living with the ongoing issues that many continue to suffer with for all their lives.
