OUR STORY
As you may or may not know, our son Jude was born with a rare life-changing condition called Oesophageal Atresia and Tracheo-Oesophageal Fistula (OA/TOF).
The initial shock when Jude was diagnosed is one we will never forget, the trauma and confusion as we had no indication before the birth that we were having anything but a healthy child. As first time parents my wife and I felt totally unprepared for the extremely challenging months ahead and with no knowledge or understanding of this condition, we felt completely overwhelmed.
Jude was born without the ability to swallow and when breathing, 50% of the oxygen was going into his stomach and not his lungs. Major surgery was performed on Jude at just two days old and then he spent a period of time in intensive care, without us being able to cuddle and care for him like other newborn babies. We spent the early part of Jude’s life in Alder Hey Children’s hospital returning initially on a weekly basis for different procedures and operations, Jude has now had 16 general anaesthetic’s which never becomes any easier.
Linked to his OA/TOF condition, Jude also struggled with severe Tracheomalacia which causes his airway to collapse when breathing. This was particularly traumatic and on a number of occasions required resuscitation, once at home which I will never forget!!
Thankfully now 5 years old, Jude is doing amazingly well but this is a condition that he will have to live with, and manage, for the rest of his life. Jude is a strong, intelligent and loving little boy. We couldn’t be prouder of our miracle child.
THE CHALLENGE
Thankfully, Jude’s tracheomalacia has improved as he has grown and become stronger. However, when we asked his consultant recently regarding Jude's tracheomalacia and how this would impact on his fitness and ability to do sport as he progresses, the consultant compared this to being an athlete and that 'he would never be a professional footballer'. We think anything is possible for Jude and children with this condition and they must not be told anything is impossible.
I want to show Jude that anything is possible and I’m challenging myself to run the London Marathon 2025 quicker than my last marathon 13 years ago which I completed in a time of 3 hrs 36 mins.
UPDATE - The encouragement and support shown has inspired me to take on a new, and more ambitious challenge. I am now aiming to achieve a 3-hour London Marathon!
Wish me luck!!
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.
Our journey was extremely tough but 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.
I want to raise money to support TOFS to allow the charity to continue do amazing work and support other families as I know just how important that this is and how this journey would have been a lot more difficult without their invaluable support.
YOUR HELP
Knowing that this money will go towards sustaining the work TOFS do and ensuring other families receive the support and knowledge they need at the most vulnerable and traumatic time of their lives will fill me with such pride to know I am giving back to help others who find themselves in this extremely challenging situation.
Any donation no matter how big or small would make a huge difference to families like us.
Thank you!!
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