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TOFS Awareness Week 2024

Meet our 2023 London Marathon team

We are proud to introduce TOFS 2023 London Marathon team. Please read their stories and consider sponsoring them.

Running in support of TOFS are:

  • Amber Nielsen 
  • Bhaskar O’Shea
  • Karen Castle
  • Richard Lawrence
  • Laura Moore
  • Jade Butler
  • Ioannis Koletakis
  • Ange Banks

Running the Virtual London Marathon for TOFS are:

  • Charlotte McGinlay
  • Hannah Featherstone
  • Kirsty Norman

Meet our runners

Amber Nielsen

Amber Nielsen

Hi my name is Amber! I’m obviously having a mid life crisis as I have entered the London Marathon! Those people who know me well will know that running is not my strong point and that this is a huge challenge for me!

One of my twins, Torben, was born in 2013 with OA/TOF. He was born at 32 weeks and it was only when he was in the NICU that they realised something was wrong. He was operated on when he was 2 days old. We had lots of ups and downs over the first year including many hospital admissions and times when we, and the healthcare professionals looking after him, did not think he was going to make it. But due to the amazing support of the Norfolk and Norwich University Hospital and Addenbrookes hospital he is a fit and healthy 9 year old and that time seems like a life time ago. We still have the odd hospital trip but we know that his future is now much brighter thanks to TOFs and the care he has received.

Once the boys were old enough I started running and cycling for my own sanity and for a bit of “me time”. I started off with 5 and 10k races and then moved on to triathlons. I love it because although we are not fast, my friend Claire and I always have fun doing these events and get to escape for the odd weekend!

The London Marathon is the biggest event yet. It will be a huge challenge for me but knowing that I will be helping other children, like Torben, in the future with the money I raise is a huge incentive!

Lets do this!

Bhaskar O’Shea

Hello! This coming April I will be running the London Marathon to raise funds for TOFS (Tracheo-Oesophageal Fistula Support). TOFS is a great charity doing brilliant work to provide support and information to both people with TOF and OA (Oesophageal Atresia). 

My little nephew who has oesophageal atresia is my inspiration for running this marathon and I’m looking forward to getting in shape for this 26.2 mile challenge. Thanks to all those who can donate and share! 🙂

Karen Castle

Quinn is our little superstar! She was born an OA/ TOF baby. This is a life long condition and means she has difficulties with swallowing, digesting food, gastro-oesophageal reflux and respiratory problems.

Quinn is a total warrior & everyone’s little ray of sunshine so I am running this marathon for Quinn and TOFS to help raise funds to support this fantastic charity.

Please donate if you can! 

Richard Lawrence

Richard Lawrence

I’m running the London Marathon 2023 for Tracheal-oesophageal fistula support, a charity that has been a huge support and source of information with the condition that my daughter was born with, where her oesophagus wasn’t connected to her stomach, but was joined to her wind pipe for which she needed surgery at 2 days old, and nearly 2 weeks in neonatal intensive care.

Although the surgery went well, Ellie still struggles to eat lots of types of food, she has needed many hospitals stays when food has become stuck, she has needed to have the part of her oesophagus stretched as the repair doesn’t grow the same as the rest. And has trouble swallowing food and with reflux, she restricts what and how much she eats as a result. This also results in high levels of anxiety at meal times.

TOFS support and advice parents of children born with these types of condition at a time that can be overwhelming and confusing, as well as adults who have grown up following surgery to correct these problems. 

They also fund ongoing research into the causes, and the best ways to treat the whole person, not just from the surgery but living with the ongoing issues that many continue to suffer with for all their lives.

 

Laura Moore

On the 23rd April I will be running the London Marathon 2023 for TOFs Charity.

Our youngest boy Samuel was born with a rare birth defect called Tracheoesophageal Fistula (TOF) with Oesophageal atresia (OA).

Samuel had corrective surgery at a day old and has had to have multiply further operations to stretch the scar tissue. Samuel also has some abnormalities with his heart that fortunately at the moment only require monitoring.

I can’t find the words to describe the emotions you feel as a parent when all isn’t as it should be when your child enters the world and I will forever be grateful for the medical team that saved Samuel.

The TOFs charity/family have been there from the start of our TOF journey, the support, information and guidance that the charity provide is invaluable. As this charity will be part of Samuels journey for the rest of his life it means so much to be able to try and give something back and therefore I will be running the London Marathon. 

Please sponsor me if you can, any amount will be greatly received.

 

Jade Butler

Hi Everyone,

I’ve taken the plunge and have a place running the 2023 London Marathon, I’ll be training over the next few months in the wind and the rain and am supporting an amazing charity very close to my heart called TOFS.

Many of you will know that my little boy Thomas was born with a rare medical condition called Tracheo-oesophageal fistula (TOF), meaning he was born unable to swallow. This, as you can imagine, came as a complete shock to us. 

Thomas was rushed to the St George’s hospital NICU unit and underwent major surgery just 48 hours after he was born to repair his oesophagus. He stayed in hospital with Will and I by his side, being transferred from NICU to the high dependency unit, and finally to the special care unit before he was able to come home at 2 weeks old.

The TOFS charity provides support for babies born unable to swallow. TOF affects one in every 3,500 babies and can only be repaired not cured.

Thomas is now 16 months old and is absolutely thriving thanks to the amazing surgeons at St George’s hospital. The process of weaning onto solid foods is slow and we’ve had to overcome some pretty scary hurdles along the way but we are so grateful knowing that we have the help and support of TOFS to guide us.

I’d love for you to join me in raising awareness for this charity. Thank you x

Ange Banks

On April 23rd I’ll be undertaking the biggest challenge of my life; The London Marathon.

This will be the furthest I’ve ever run and the training runs have been tough (so much so that I had considered pulling out).

However, I know the 26miles will be nothing compared to the multiple operations and investigations Sammy (my friend’s son) has undergone, and all before his 5th birthday.

Sammy was born with OA/TOF (Oesophageal Atresia / Tracheo-Oesophageal Fistula) and other associated issues. This is where his stomach joined his windpipe and his food pipe was a blind end pouch, so nothing would pass into his stomach and would cause him to choke on his saliva.

Although he’s surgically fixed, he’s not cured, lives with a number of issues and has had many operations and investigations under anaesthetic (19 and counting) to help food reach his stomach, along with spinal cord surgery.

TOFS charity provides so much support to Sammy and his family by helping them and other families through the challenges of bringing up a child with OA/TOF, VACTERL and associated conditions.

TOFS vision is for anyone born with OA/TOF to be able to live life unlimited and are working towards a world in which those born with OA/TOF live long and healthy lives, unconstrained by the impact of being born with these conditions.

Knowing I am raising funds for such an important cause will (hopefully) get me to the finish line!

Charlotte McGinlay

Each year for the past 4 years I have tried to do something in order to help raise funds for TOFS, whether it was the teddy toddle walk or through birthdays, I ensure I do it every year.

TOFS helps people like myself with all the information someone would require and the help they need. T

This year I have decided to do the Virtual London Marathon run.

All of this is for my son Blake who was born a TOF/OA, He was born OA/TOF. At only 2 days old he had to have surgery and spent 11 days in NICU. After only a few weeks at home he started vomiting every feed he had, and then he stopped breathing and had to have CPR. In hospital they thought it was bronchiolitis and sent us home after 6ays of IV fluids and antibiotics.

A couple of days later he stopped breathing again and had to be was blue lighted to hospital. He contrast which had shown his oesophagus had closed and required a balloon dilatation. Since then he has had 12 balloon dilatations, a fundoplication, has now been referred to a gastrologist.

Blake struggles day to day with his condition but never shows it. He carries on just like we do as a family.

Please donate to raise funds for this amazing charity that helps spread awareness about this rare condition.  I thank you all with my whole heart. xx

Kirsty Norman

I will be running the virtual London Marathon to raise funds for TOFS (Tracheo-Oesophageal Fistula Support).

TOFS supports families and children like my nephew. Their resources and peer support have been really valuable to my sister’s family. I enjoy running and am looking forward to the marathon challenge.

I will be cheered on at various locations by my nephew and family. Hoping to raise as much as I can to help TOFS continue their valuable work.

Thank you TOFS!

kirsty norman

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