On 11th September 2023, our son Arlo was born with a rare condition that effects 1 in 3,500 babies know as TOF/OA (Tracheo-Oesophageal Fistula/Oesophageal Atresia).
In terms we could understand it was explained to us, Arlo was born unable to swallow as his oesophagus was not attached to his stomach and he had to have life saving surgery at the Great North Childrens Hospital, just 16 hours after he was born.
Arlo continued to spend the next 5 weeks in hospital between PICU and Ward 9, needing another surgery at 3 weeks old for pyloric stenosis, which meant that the milk he was swallowing could not exit his stomach and he would vomit after each feed, terrifying the life out of us due to his condition.
Arlo has been into theatre 5 times, has had countless cannulars and heel pricks, has undergone a weaning programme for very strong painkillers and continues to be under the care of the incredible paediatric surgeons at GNCH.
All the while being a smiley, happy little boy, terrorising us and his big brother who adore each other!
Support from the NHS, GNCH and TOFs was invaluable to help us learn about our son’s rare diagnosis and begin to understand how we would support him as he was growing.
Annie raised a fantastic amount for the GNCH at last years Great North Run and this year I am raising money for TOFs to thank them for their wonderful support & education for all families, GP’s and in fact anyone learning about this condition.
I know that bills are high and we are all feeling the pressure but anything you are able to donate would be massively appreciated ❤️
If you’d like to know more about his condition or about the work charity delivers you can head on over via the link below:
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