Imagine your child being born unable to swallow. Or imagine being unable to swallow anything as an adult. It's a scary thought. Caused by congenital conditions called oesophageal atresia and/or tracheo-oesophageal fistula, or OA/TOF for short, it's a reality for the parents of one in every 3,500 babies born annually in the UK.
Major surgery and specialised treatment at key children's hospitals in the country is necessary for survival. While some children born with these conditions experience relatively few problems (after the surgery), some are not so fortunate and can undergo numerous additional procedures throughout their childhood and into adulthood. Life-long follow up is absolutely essential. The journey can be a difficult one for all concerned and this is where the charity TOFS comes in. This is TOFS Awareness Week. It runs from 26 February to 4 March, to coincide with the internationally-recognised Rare Disease Day on 28 February.
TOFS is a UK-based charity, funded through donations and fundraising, dedicated to providing pastoral support to families of children and adults born with these congenital conditions. From the first moment that parents find out that their child has OA/TOF, TOFS is there to support them with information, experience and guidance through the everyday challenges they face, from birth onwards.
The charity's website is packed with information to help all affected on their TOF journey, with a selection of leaflets that can be downloaded and printed to help explain the condition to friends, relatives, carers, teachers and medical professionals. There are also two thriving Facebook groups where parents and adults born with OA/TOF can share concerns, experiences, problems and progress with each other.