TOFS

Registered Charity Number 327735

Total raised
£3479.90 + £565.00 Gift Aid = £4044.90
Fundraising
£3384.90
+ £546.25 Gift Aid
Donations
£95.00
+ £18.75 Gift Aid

About TOFS

TOFS offers support to people born with Tracheo-Oesophageal Fistula (TOF) and/or Oesophageal Atresia (OA). These are rare congenital malformations of the gullet and windpipe. Immediate neonatal surgery is a treatment, not a complete cure. We are UK-based and receive no public-sector support at all. For more information please visit our website www.tofs.org.uk.

Get fundraising!

If you'd like to run, swim, bake (or do anything else to raise some money), click the button below to get started. It's quick and easy to register and by doing so here at Wonderful.org, you can be sure that every penny raised will reach TOFS.

Current fundraising pages

London Marathon

What can i say, I am running the london marathon, my biggest challenge yet. I am doing this in memory of my Son, he is my inspiration. When i was pregnant and they could not see a stoumach on the scan. We knew some thing was wrong, and he would be born with t.o.f. Shortly after birth, John was whisked away from us for intensive care. john was born with his wind pipe attached to his oesphagus and not his stoumach. He was given an operation to fix this and was fed through a tube, going straight into his stomach. When a baby is born with T.O.F there can be many other complications. John had a laryngeal cleft, therefore had to have another operation to fix this at a month old, and had to be given a tracheostomy, so he could breathe. John also had a narrow artery to his heart, so therefore yet another operation.After 5 months of being in hospital, he was finally allowed home, yet had to come home with a lot of equipment including Oxygen, tracheostomy, gastrostomy and a Sats machine. Hospitals were still a regular visit with John having many difficulties:- breathing, bleeding from sites, list goes on and due to very low immune system did not even get away with chicken pox or pneumonia. Finally around 14/15 months old John was allowed to start eating a little by mouth, having a little bit of yoghurt and doctors were so pleased with how he was getting on he was going to have his tracheostomy removed at 18 months old but unfortunately that was not to be because John unfortunately passed over. His secretions (which had to be sucked out through his tracheostomy) were too low, and exploded his lungs, he died within seconds at home at just 15 months old. This was a big shock for us all because after everything and with only 3 months to go before tracheostomy was going to be removed, this really was unexpected. John is 1 inspiration though because throughout his short life, he sure was a very happy boy, always smiling, never let any thing upset him. Therefore I really do not want any baby or child to have to go through what my son did, and feel T.O.FS is an amazing charity, who help to support the parents going through similar situations, also help to make more research so hopefully 1 day there will be an end to babies being born with T.O.F.

Ann Weeks

  • Health

Virgin Money London Marathon

Jacob (Bobby as he’s affectionately known) is my nephew and superhero. Some of you will have met him and most of you will have heard me talk about him and the ordeal that he has gone through in the first 4 years of his life. Because of him I am taking on a challenge that befits the strength and courage of a true superhero and will be running the London Marathon in 2020 to support TOFS, the charity that has provided an emotional lifeline to my sister and her family.When a child is born it turns a parent’s world upside down but on the 30th October 2015 just before my sister went into labour none of us could have predicted that, within 24 hours, the moment we had been waiting for with excitement would turn into an emotional roller coaster and a period of fear and uncertainty.Shortly after his birth when nurses realised that Jacob was unable to feed he was whisked away from his Mum and within hours was travelling in an ambulance from Stevenage to the Royal London Hospital where, at less than 24 hours old, he was operated on after being diagnosed with Tracheo-Oesophageal Fistula (TOF) and Oesophageal
Atresia (OA). This is a rare congenital condition of the food pipe and/or airway that affects one in every 3,500 babies.At 4 years old Jacob has been through more surgical intervention already in his life that many people will experience in a lifetime and despite that he makes me so proud that he deals with it all with a strength and positivity that is far beyond his years as well as with a smile on his little face (I’m sure my sister might challenge that statement).As a member of the TOFS charity my sister has made friends for life with people who understand what she has been through. She is able to share experiences and seek advice and support from a wide network of parents who help each other through what is a tough condition to understand let alone live with. I hope by completing this challenge and with your sponsorship this valuable charity will continue.

Sarah Barnes

  • Health

Great North Run 2019

I am running the GNR this year to raise money and awareness of the TOF charity which little over a year ago I had never heard of.
My my wife and I had twin boys in May 2018, after a relatively quick labour Twin 1 Tom came out screaming as a baby should but Twin 2 Wilf was silent when he was born and has to be resuscitated twice before we eventually got to meet him at around 7pm. Both boys were gorgeous and healthy weights but we soon realised something wasn’t right with Wilf, my wife had hold of him and kept saying he’s not breathing properly but the hospital staff just put it down to fluid on his lungs and kept telling us not to worry. Then he stopped breathing and was taken away from us, they got him breathing again and assured us it was just fluid on his lungs and all will be well. He was put in NICU as a precaution and my wife and Tom were put on the ward. Fast forward a few hours, I’d gone home to get some sleep, it was now 2am and I received a phone call from my wife telling me she had a consultant who had just explained that Wilf didn’t have fluid on his lungs he needed a life saving operation because his oesophagus had a dead end and he had a tube going from his tummy into his lungs, he was a TOF baby and had TOF and OA. Wilf was then transferred to The RVI in Newcastle for emergency surgery. Wilf was fixed but not cured the following day, thankfully the surgery went well and he spent the following 2 weeks in PICU. My amazing wife was eventually allowed to breast feed him on day 9, this was a scary time because it was the first time we know if the operation had been a real success and he was able to swallow and the oesophagus was completely sealed, we didn’t want any leaks. Thankfully it all went to plan and after Wilf dropped from his birth weight of 6lb4 to 4lb10 the aim now was to get weight on Wilf.
Fast forward to to today and Wilf has had a very rocky road, in February this year he was diagnosed with severe tracheomalacia (floppy/flat windpipe) this was after months of a constant chest infections and trouble breathing through the night. His doctors said it was one of the worst cases they’d seen, so Wilf has CPAP at home on a night to help keep his airways open and he is also on constant antibiotics to keep the infections at bay.
Eating wise Wilf did really well with his breast feeding and milk and at 6 months we started to wean him (very nervously) with pureed fruits and veg. All was going well until January this year and he choked for the first time, my wife was on her own with Wilf his twin and their older sister. Wilf went blue and floppy and she had to call an ambulance, after lots of bouncing Wilf up and down and back smacks the food eventually dislodged from his oesophagus and he could breathe again. Unfortunately this is now part of our lives, Wilf chokes and we are learning how to cope with it. He choked just this week and again my wife was on her own and had to call an ambulance and he was taken to our local hospital and it resulted in him going into surgery at The RVI on Friday for emergency surgery to stretch his oesophagus and a bronchoscope to check his airways. His team of doctors have said he has dismobility of his oesophagus and airways so this is our next chapter.
The TOF charity have been amazing and are always there for advice and reassurance, we have learnt so much in Wilfs 14 months of life and that is down to the support we receive from Wilf amazing team of doctors, nurses, SALT’s, physio, but mainly the TOF charity and I am proud to be doing the GNR for them.
Please help me reach my target.

Brendan Milburn

  • Health
Show all fundraising pages

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