News

Introducing our amazing Great North Run runners

Published: Thu, 30th May 2019, 11:11:00 AM

We are delighted to announce that the following people will be running the Great North Run in September for TOFS.  

  • Natasha Birkett, TOF relative;
  • James Durrant, TOF grandparent; (story and photo to follow)
  • Brendan Milburn, TOF parent; (story and photo to follow)
  • Laura Sullivan, TOF relative; and
  • Matt Way, TOF parent

 

Matt Way 

My Daughter, Evie, was born with TOF/OA which was repaired very soon after birth. She had a tough start, spending the first 8 months in and out of hospital and going through some tough times. Just before her first birthday, she came to live with my partner and I; and she has been doing truly amazing with her recovery, taking big strides with her eating and with catching up on her physical development. She is really coming into her own at Two and a half, and is always so happy, smiley and social, which she has always been! 

She had her feeding tube out in June 2018, just in time for the birth of her baby brother! Since then she has fully jumped into the world of food and there is nothing she won’t eat! She loves showing her brother lots of different foods and which are the best ones! 

We have had lots of support and advice from the TOFS charity and we feel they have been a solid pillar for us to reach out to when needed. It is only right that I can do something to help give back, for the support and advice given to us! I just want to end with a massive thank you! 

See Matt's fundraising page:

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=MatthewWay1&pageUrl=1

 

Natasha Birkett

I am running the Great North Run to raise funds for TOFS (tracheo-oesophageal fistula/oesophageal atresia) a charity supporting those born with TOF/OA through to adulthood. The charity also supports the people who care for them and also health care professionals. 

My brother was born with a H type TOF, on 13th August 2003, he was first operated on for this illness at the end of August when they eventually found out what was wrong with him. He got better but then he started going downhill again, he was constantly on antibiotics and he was losing a lot of weight. It wasn’t until the February when he was taken back into hospital that we found out his H type TOF had re-occurred 

I was only young myself when going through this challenging time, I remember my baby brother as being hooked up to life support machines, him relying on his tracheostomy to breathe, him only being able to drink/eat through a tube in his belly. He spent weeks upon months in Alder Hey having surgery after surgery.

My brother is now a very healthy 15 year old, who has achieved so much for a person that was told they would NEVER have an exercise tolerance. He plays for Scotland U16s rugby league team, toured in France and has played for the borders U16s rugby union squad. February last year, had his final operation(touchwood) which was to cover up the scars on his neck. My brother has put up a lot of challenges in his short 15 years of life and running the Great North Run is the least I can do for an amazing charity helping more families through what my family went through.

Support Natasha here:

 https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=NatashaBirkett&pageUrl=1

 

Laura Sullivan

On 15th March 2018 my nephew Conor was born weighing a healthy 8lb 6 ounces. Being the first grandchild, it led to a lot of excitement in our family! Three days later, mammy and baby readied themselves to leave hospital and the final checks were carried out. It was then that nurses realised Conor had lost a lot more weight than is usually expected. He was sent for tests where it was discovered that he had TOF/OA. Conor was then transferred to Temple Street Children’s Hospital where he underwent repair surgery to join the oesophagus to the stomach. After 19 days Conor was finally allowed home.

Over the following weeks and months my sister Sharon found herself facing a lot of unanswered questions; What should he be eating? Should he be doing this? Is this normal? That was until she discovered tofs! Tofs has been a huge support in answering these questions and alleviating many stresses and worries. The opportunity to connect with others with shared experiences has been extremely informative and reassuring.

Knowing how much this charity has helped my sister, I jumped at the chance to run in the Great North Run for tofs. Coming from Ireland, where there is no such charity or organisation, I can't wait to line up with other tof runners and hear their stories!

See Laura's fundraising page:

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=LauraSullivan8&pageUrl=1

 

James Durrant 

My granddaughter Cadence was born on the 24th of October 2016 at the RVI in Newcastle. Cadence was diagnosed with Long gap OA and had her repair done at 13 weeks, due to other health problems Cadence stayed in the hospital until she was 5 months old, we’ve had many trips back and forward to the hospital since leaving but she always bounces back. Cadence started nursery in January 2019 and continues to thrive and is bursting with personality.

Myself and Faye Ramage have worked as a team to raise money and awareness for TOFs, we have previously done a sky dive now we are going to tackle The Great North Run.

See James' fundraising page:

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=JamesDurrant1&pageUrl=2

 

Brendan Milburn

My wife and I had twin boys in May 2018, after a relatively quick labour Tom (twin 1) came out screaming as a baby should but Wilf (twin 2)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 but needed a lifesaving operation because his oesophagus had a dead end and he had a tube going from his tummy into his lungs, he was a TOF/OA baby. 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 breastfeed him on day 9. This was a scary time because it was the first time we knew 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. He dropped from his birth weight of 6lb4 to 4lb10, the aim now was to get him to put on weight. 

Fast forward 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 he has CPAP at home at 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 the twins 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 and we are learning how to cope with it. He has now been diagnosed with dysmotility 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 Wilf’s 14 months of life and that is down to the support we receive from his 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.

See Brendan's fundraising page:

https://wonderful.org/fundraiser/greatnorthrun2019-0e7e9eef

We are incredibly grateful to those runners who are running with their own balloted places.

  • Cherelle and Dean Ord - TOF relative
  • Faye Ramage - TOF family friend (story and photo to follow)

Cherrelle and Dean Ord

Neither of us have been into our running although we really enjoy our fitness, its more cross training led. 

Last year we were overjoyed watching the updates on TV of the GNR and thought we would absolutely love to do it. Dean has so much more motivation than myself when it comes to running, I needed a really good excuse to do it!

We applied in January and were advised from friends it would be unlikely that we would get a place. Dean got this email first advising he was in and then I followed not long after.

As I need that extra motivation, I wanted to do it for a charity, but the charity had to be close to my heart. I asked my brother and sister in law if we could do it for a charity that supported them through the tough times they had with Reese since her birth and they without hesitation said TOFS.

That was it... I work alongside technology and content marketing, so I had in my head how I wanted our campaign to launch and work.

I did put off doing the video for a short while as I knew it would bring back so many memories and it would be emotional. I decided to launch the campaign on May 8th to mark the 1year anniversary of Reese being fully discharged from hospital. Reese is our motivation; we get to spend quality time with her each week and are very grateful to have her in our lives.

Dean is storming the training, me not so much! 2 weeks today we launched, and we have raised £570, I’m really confident we will achieve the £1k mark.

Footnote: watch the Ord's video of their inspirational niece  here

See Cherrelle and Dean's fundraising page here:  

https://www.justgiving.com/fundraising/theordinarys

 

© Tracheo-Oesophageal Fistula Support
TOFS is a Registered Charity in England and Wales (327735) and a Private Company Limited By Guarantee without Share Capital, registered in England and Wales (2202260).
Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
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