Tracheo-oesophageal fistula and oesophageal atresia - TOF/OA for short...never heard of it? No, neither had I until until about 5 years ago. Now I hear about it A LOT! My wife (Ally), is a Speech and Language Therapist at Great Ormond Street Hospital. She specialises in children's feeding and swallowing difficulties, which includes TOF/OA. She is part way through a PhD focussed on understanding this rare condition better. The TOFS charity have supported her research.
About 150 babies are born each year with TOF/OA in the UK. They are born without the 2 ends of the food pipe joined up. So when they try to feed, the milk can't reach the stomach. Often there is an abnormal connection between the food pipe and the wind pipe, putting the baby in danger of choking. They need major surgery, to be able to feed and often have ongoing problems with eating/drinking and breathing. Having a rare disease can be a lonely, frightening experience. TOFS is the charity that provides fantastic support to those affected by this condition, from helping parents manage in the early days and connecting adults affected, to guiding better research and advocating for improved access to health services. I'm taking on the RideLondon 2023 challenge to raise money so that they can continue their vital work. Any support you can give would be much appreciated.