OUR STORY 👨👩👦
As you may or may not be aware, our son Freddie was born with a life-changing condition called OA/TOF.
Put simply, Freddie's throat ended in a dead end rather than connecting to his stomach, while the part of his oesophagus from his stomach was connected to his airways. This meant that Freddie was born without the ability to swallow and when he was breathing, 50% of the oxygen was going to his stomach and not his lungs.
As with many TOF parents, we had no complications throughout the pregnancy and no idea that anything was wrong until moments after he was born.
Those first few minutes of pure joy and relief following Freddie's birth soon disappeared when we realised there was something seriously wrong when he went a dusky purple colour, after latching on for his very first feed.
What followed was the most traumatic period of both mine and Hannah's lives. In short, Freddie was taken into intensive care, transferred to a hospital 100 miles away in Oxford and underwent an 8 hour operation on day 2 of his life all followed by a 2 week stay in NICU before being allowed to come home.
Throughout everything, especially that time in Oxford, having the support and resources provided by TOFS made such a difference.
Knowing we weren't alone in this and being able to learn more about the condition, and what was to come, helped us deal with the situation so much better.
Thankfully, Freddie is doing amazingly well now but this is a condition that he will have to live with, and manage, for the rest of his life. It will effect what, and how he eats as well as managing other complications which can arise from this genetic condition.
THE CHALLENGE 🏃 🇬🇧
Having had two ACL knee reconstructions in the past, running 26 miles is going to be no walk in the park for me, that's for sure. But completing The London Marathon has long been an ambition of mine that I'm determined to conquer.
Even more so now with Freddie, knowing that my efforts could go a small way to helping families like ours.
WHY TOFS? 🗨
TOFS is the UK based charity helping families through the challenges of OA/TOF. Their work aims to provide trusted, accessible and reliable information to OA/TOF patients, as well as becoming increasingly involved with various research initiatives. As it's a rare condition, often doctors and medical professionals are unaware of it, so this support really is vital.
YOUR HELP 🙏
I'd be eternally grateful for any donation you could make.
Knowing that this money will go towards sustaining the work TOFS do and ensuring other families receive the assistance and assurance they are not alone will fill me with pride.