We are happy to announce our Team TOFS runners for the 2024 Great North Run.
Running to support TOFS are:
- Sarah Winspear
- Brendan Bivens (own place)
- Victoria Porter
- Terry Bee
- Sean McEniff
- Paul Shepherd
Meet your runners!
Sarah Winspear
Hi! I am Sarah and running the Great North Run (my first half marathon!) to raise money for TOFS.
My little cousin Isobel was born with OA/TOF and the charity helped support her and my family understand the condition, and gave ongoing information throughout the first years of her life.
Also, I am now part of the charity as the Membership, Communications and Events officer, and see behind the scenes towards the important work it takes to provide this support to parents and adults born with OA/TOF.
I am excited to raise money for such an important cause and the great work TOFS does.
Brendan Bivens
Before our daughter Roux was born, we had never heard of TOF/OA. It’s a condition that affects just one in 3,500 babies.
After she was born, Roux needed resuscitation as she was choking on her own saliva and because her stomach was connected to her windpipe, as she was breathing she was pumping air into her stomach.
As the condition is specialist, we had to be taken to neonatal intensive care at Leicester Royal Infirmary the day she was born and told she needed surgery within 24hrs.
There are a lot of other things that come with TOF that Roux has including GORD, vomiting, struggling with foods, heart problems along with others that luckily Roux doesn’t have. It has been challenging since bringing her home. She can’t eat like other children her age, she is still on more pureed food than solid, has had many choking episodes and has had infections. She has to take medications everyday, has regular check ups at LRI and will likely still need help as she gets older.
Despite all of this, Roux is the most beautiful & happy little girl. She has come so far in a year and is turning into such a lovely, cheeky character. She’s walking/running, saying her first words and loves Disney, watching football and playing with us and her siblings.
To go through all of this when your baby is just hours old, was such a scary experience and at the time we didn’t know if we would actually ever get to bring her home. When we got to Leicester we researched the condition online & that’s where we found the TOFS charity.
The support Mel and I have received from TOFS has been amazing. It’s been invaluable to have the help we’ve had from TOFS and definitely made our journey less scary.
Thank you
Victoria Porter
On 8th September I will be taking part in the Great North Run, raising money for TOFS charity. TOFS have been a great source of support to me through some tough and uncertain times after Beatrice was born unable to swallow.
The TOFS website, Facebook page and CHEW magazine are useful and informative and allow parents to share experiences and receive support about TOF/OA which is a rare congenital condition.
Your donation will help TOFS charity to carry on the wonderful work they do.
Your donation means so much, thank you!
This one’s for you Bea, so proud to be your mummy and watch you grow into a happy, healthy 7 year old.
Terry Bee
Hi. My name is Terry and on the 8th September I will be running the Great North Run for TOFS.
TOFS helped us through some of our darkest times when we first had Dottie-Jay and we didn’t have a clue what we were doing. But after reading other people’s stories we eventually got our heads around everything that was happening.
The advice and support shown on the Facebook page alone helped us to adapt and adjust to how different our life was going to become.
I’m going to try my hardest to raise some money for such an important cause which is close to all of our hearts. Dottie-Jay really is my hero, she’s the bravest little girl I’ve ever known (also one of the loudest). This won’t be any easy task as I’m currently recovering from ACL surgery myself but I’m determined to do it for her. She has even been my running partner at the beginning of the couch to 5k but apparently running isn’t for her – – or so she tells me.
Sean McEniff
I am 20 years old and was born with Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA). I am running The Great North Run Half Marathon in September 2024 on behalf of the TOFS charity to raise awareness for this unheard / rare condition which affects roughly 1 in 3500 babies.
I had a repair by Mr Matthew Jones at 12 hours old at Alder Hey Hospital having been rushed from Glan Clwyd Hospital. He ultimately saved my life. Following this, between the ages of 2 and 20 I have had 8 scopes and within this I have had 6 dilatations.
TOF is characterised by an abnormal connection between part of the oesophagus and the trachea (windpipe). OA occurs when a short section at the top of the oesophagus (gullet or food pipe) does not form properly, resulting in a blockage. As a result, food cannot pass from the throat to the stomach.
This condition still affects me to this day having recently had a scope in March 2024 with ongoing issues. People who are born with TOF/OA have a significantly increased chance of having the ‘TOF cough,’ respiratory problems, asthma, chest infections, swallowing issues, choking, acid reflux, and reduced appetites. This is not just a huge burden on the person having to deal with the TOF/OA condition but also to the mother and the family members of the person with the condition.
This condition needs more awareness and recognition considering my mother did not know I was a TOF/OA baby until I was born. Despite advances in ultrasound technology, the diagnosis is made before birth in less than 20% of cases. This is incredibly low; it could be argued with more advanced technology and earlier spotting of this condition there could be increased preparation and contingency plans put in place once a TOF/OA baby is born.
I am also running this half marathon to display to fellow TOF people that this condition does not define you as a person and does not necessarily mean you are at a disadvantage in society. I have always battled through with the condition and have never let it stop me living life to the maximum having been an avid sport player since a young age despite this very rare condition.
Paul Shepherd
I’m running the Great North Run for TOFS, the charity that supports those born unable to swallow because my son Kerr was born with this condition and I want to raise as much money for TOFS as possible.
My son Kerr was born unable to swallow and the TOFS charity helped my family and I through the worst time in our lives with support and helped us adjust to our life with Kerr’s condition.
Kerr is an amazing little boy, he always has a smile on his face and is a total inspiration to us all.
I feel privileged to be running my first Great North Run for TOFS.
Thank you very much for all your donations, it means so much to me and my family.
