My name is Amreeta! Perhaps many of you have read my posts on the group so know my background with TOFS anyway.
I’m running the London marathon to support the TOFS charity as they’ve been the biggest support network we have had since our son – Rohan was born with long gap pure OA in 2019, and oh man what a rough two years it has been!
Rohan has had a long and complicated journey since his birth, so like many TOF and OA parents we have needed this community to help get us through the tough times as well as celebrate any good. He is still fully jejunal fed, the dream is that one day he is eating and drinking orally.
I hope to raise as much money as possible for TOFS and would appreciate your support on my journey to complete the marathon. Thank you!
Hi, my name is Chris and daddy to 8mth old Luca who was born with OA/TOF.
Since finding out in early February 2020 that I would become a daddy for the first time, it has been a very strange and challenging 17 months! Starting with a global pandemic, complications with the pregnancy, constant check-ups at hospital (which my partner had to do all on her own due to coronavirus rules!) to finding out 2 days after Luca was born that he would need life-saving surgery.
Like many families with a TOF child, I had no idea of this condition and how rare and challenging it is until Luca was born. This is where the TOFs charity came to the rescue and gave us so much information and the opportunity to talk to other families in the same situation as us.
Since Luca had his corrective surgery, he’s had a number of stretches and other renal surgeries and has been our brave little soldier throughout. He is my little hero!
I’d like to thank this amazing charity for the opportunity to run the London Marathon to hopefully make both my partner and Luca as proud as they make me and hopefully raise lots of money along the way.
21 years after saying “you’ve got to run a marathon to run a marathon” I’m delighted to say TOFS (Tracheal-Oesophageal Fistula Support) has given me the opportunity to do just that.
To be fair, life did take a rather unexpected turn when I was diagnosed with Hodgkin’s Lymphoma at 12 weeks pregnant with our first child. But chemotherapy was nothing compared to the battle Benjamin has fought. He chose life from the moment of conception, withstanding 5 rounds of chemo and me critically ill with pneumonia before even making his grand entrance to the world 9 weeks early…and that was just the prologue to his own incredible story. Being born with TOF and OA (Oesophageal Atresia) has meant breathing and eating have been a constant challenge. However, an extensive medical and surgical career, along with lots of tears, sweat and micromanagement from us, combined with sheer strength and determination from Benjamin, he is living a remarkably fulfilling life.
It would be fair to say we are in awe of the way Benjamin faces every day. He really is one of the most resilient individuals and we are truly blessed to have the privilege of calling him our son.
You are our real-life superstar and dearly loved by so many people, so Benjamin……this is for you xx