News Entry


  • Huge thanks to our Great North Run 2017 runners

  • Published: Mon, 23rd October 2017, 08:39:00 AM
  • Great North Run 2017

  • Back in September our fabulous runners not only ran the Great North Run but also smashed their fundraising targets. We are so grateful to each and everyone of them. Thank you all so much.


    A very happy and relieved Rebecca


    Many thanks Rebecca, you smashed your £350 target and raised £484!

    Rebecca's story: Jack was our first baby, an IVF baby, and although there is no evidence to say this is linked in anyway, I always wonder if this may have had some possible impact. I had a relatively easy pregnancy, but being an older mum I had a few more checks along the way. They then picked up that I had Polyhydramnios (this according to research shows that it can be linked to a child being born with the condition Jack has, although this was never explained to us at the time and never picked up on a scan). In some cases, Tof is picked up at scans so at least you can be aware. This in hindsight was probably for the best for us, as I’d have worried endlessly until I gave birth.

    After complaining of getting itchy hands and feet at one routine visit, I was whipped into hospital and was induced. This was because of a condition called cholestasis. (This can cause stillbirths, so it was all panic stations). In the end after several hours/days of labour, he came out after an emergency c-section. Jack didn’t feed well initially so they took him away to be fed for me and give me a break, which I thought was great. But hours later they came back to explain he was being sent for an x-ray and then had to be transferred to Norfolk & Norwich hospital for a repair. Jack and I stayed there for just a little over 3 weeks or so. I had no idea what his condition was, and the hospital were amazing, and explained as well as they could, but the charity, has really helped us get our heads around what this condition is all about.

    Jack was diagnosed with Tracheo oesophageal fistula o/a (short gap).  He had a very rocky start to life but we have been lucky compared to some who have this condition. Jack is 4 years old and is doing well now, but is still very limited with his food in take. Obviously, Jack’s oesophagus has been repaired but never works the same as a child born without this condition. We were told it won’t contract properly, it will be narrow, and there will be thick scar tissue, so after all this, imagine having to learn to eat. He struggles with some foods but has a good range of different textures, and the specialists are pleased with his progress.  Jack’s school have been supportive and are aware that he can have a high risk of choking and food getting stuck in the oesophagus, and that there is no way of stopping this from happening, but have been fully briefed on how to tackle these episodes. I wanted to try and support Tofs that little bit more, by attempting to do the Great North Run, for a charity that have given us support, especially in the early days and bring more awareness to this rare congenital condition.


    Mike in action


    Thank you so much Mike for raising £546.20. You did so well! 


    Mike's story: Our beautiful daughter Nahla was born in July 2016 with a TOF/OA. We went home unaware of any issues, however we were back in hospital 24 hours later thanks to our midwife due to her excessive weight loss. Her reluctance to feed in Bath led us being referred to St Michael’s hospital in Bristol where her diagnosis was confirmed.

    She was successfully operated on the next day and 12 days later was allowed to come home again. Now 11 months on and 6 stretches later, Nahla is doing fantastically well progressing nicely on to feeding herself and more textured food. She has a particular fondness for Wotsits and Rusks!!

    Now we are learning how to work through her condition. The information and advice we’ve received from TOFS and other families experiences has been a great help.

    I’m so proud to be running for TOFS and raising money for them, so they can continue their amazing support all brave TOF families.



    Pierre celebrating spotting his wife Mathilde amongst the crowds


    Many, many thanks to Pierre who has proved to be not only a very competent runner but also a very successful fundraiser, raising an incredible £3761. Thank you so much.

    Pierre's story: Our daughter Margot was born with TOF/OA long gap on June 2nd and will remain in neonatal care until she has grown big enough to operate in a few months' time.

    We were first introduced to TOFS by our medical team during my wife's pregnancy which we have found extremely useful in educating and preparing ourselves for the arrival of our precious little girl.

    I wanted to challenge myself with something I had never done before and what better thing to do than honour my daughter and her condition with raising money doing the Great North Run.


    Pete loved the jelly babies from the TOFS cheerleading team!


    Thank you Pete for beating your target and raising £959.50 for TOFS. It's very much appreciated.


    Pet's story: Our son, Caden, is four. He was born with TOF / OA, as well as kidney and heart abnormalities. Whilst we have had first rate care from the NHS for Caden, it's the TOFS charity that has helped us with living day to day with the condition. It's through TOFS that we learnt when and how to:

    • wean him.
    • how to recognise a stickie (just days before being hospitalised with our first one).
    • how to help him with his reflux and his anxiety.
    • ... and the list goes on and on.

    I'm taking part in the Great North Run as a small way of saying thank you - I shudder to think how our family would have managed without the support of TOFS.


    Nikki and Mike: running buddies extraordinaire!


    Kenny had to pull out of because of injury on medical advice but still kindly did fundraising for us with a pub quiz. Kenny's wife Nikki used her own place to run for TOFS. Thank you Nikki for being a superstar and running so well so soon after giving birth! You raised an impressive £707, thank you very much.


    Here is Kenny's story: My wife Nikki and I took up running a couple of years before Evie was born and had done the Great North Run a couple of times. When Evie was born our lives turned upside down. We had the joy of a new baby and the stress and fear of having a child with TOF. These circumstances meant that finding the time to run became harder.

    During the first weeks and months of Evie's birth we found the advice and support from the TOFs community invaluable. Basically we went from feeling totally alone to feeling reassured and we have TOFs and the TOFs community to thank for that.

    Fast forward three years, Evie is fit and healthy and seems to get off lightly compared to other TOFs - only three or four overnight hospital stays in the last year - and she is loving being a big sister to her three month old sister Alice.

    However, I have put on about three stone and haven't run for almost a year. Nikki wants to get back into running after having Alice. What better way to do it than set a tough challenge and raise money for the charity who helped us through the early days and still support us? 

    Both Nikki and I are raising money for TOFs. Nikki was lucky enough to get a place in the ballot and TOFs were good enough to let me have a charity place. Now the pain really begins....