Hello everyone! Thank you for taking the time to view my fundraising page.
I am honoured to be running the 2025 London marathon to support TOFS, a charity dedicated to those born unable to swallow.
OA/TOF are rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway) that affects 1 in every 3,500 births.
I honestly can’t talk about this without getting emotional. The whole experience for me was extremely distressing. We are truly grateful for everyone who supported and continue to support our family.
Rory’s story: Rory was born on the 10th January 2016 at Basildon hospital after a quick and wonderful labour.
Rory was born a perfect 6lb 14oz and was 3 weeks early. We were discharged that evening, but I was concerned with the lack of feeding and strange noise he would make.
The next day, we returned to our local A&E department. The doctors eye examined Rory, gave a suppository to him and explained to me that the lack of feeding and wheezing sounds were due to mucus from the quick birth.
Days passed and nothing improved, so we decided to go back to our local A&E for a second opinion.
They took one look at Rory and rushed him straight into a ward room, where a tat tube was put down Rory’s throat, confirming his diagnoses.
Rory had lost 25% of his body weight and had contracted sepsis.
We were blue lighted via CATS to Addenbrooks hospital for life saving treatment.
Once Rory had arrived in paediatric intensive care, we were told to prepare for the worst and that Rory may not survive the night.
After a couple of days in intensive care with the most incredible team of specialist, the life saving 5 hour surgery was completed, with the anaesthetist rubbing Rory’s leg for 2 hours of the surgery to save it due to a blood clot.
Rory was 11 days old at the point.
Fast forward a whirlwind 2 years! Rory had his first solid food, a thing we would have taken for granted.
In Rory’s 8 years, he has had 7 surgeries, and is the most infectiously loveable little boy you could meet. He struggles still with choking and blue spells, as well as issues with his speech but we are in awe of his constant determination with life and his love of food! (Especially a Chinese takeaway!)
We are often judged by his cough and have our whole household has adapted for Rory. We would not have this any other way.
This is an honour and a privilege to run for this amazing charity who support so many families. They are a lifeline for us and many many other families, especially as we had never heard of Rory’s condition!
Your support would mean the world to me, to help me reach my fundraising goals. TOFS receives no support from the Government and relies completely on donations from friends, family and supporters.
Thank you for taking the time to read this. Please follow my page as I am taking you all along with me!
Love Kate. Proud TOF Mum
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