Interior Design Masters competitor, solicitor and actress, Charlotte Fisher, has become the first celebrity ambassador for the charity, TOFS, a charity supporting those born who are unable to swallow.
Established just over 40 years ago as a self-help group, and as a registered charity in 1987, TOFS is the only UK-registered charity supporting people with OA/TOF and associated conditions. Oesophageal Astresia (OA) and Tracheo-Oesophageal Fistula (TOF) are rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway) that affects one in every 3,500 people.
On 3 February, 2023, Charlotte and her husband, Sam, welcomed their first baby, Elton, into the world, but shortly after he was born he was diagnosed with OA/TOF. Charlotte says: “It was so frightening. Not long after he was born, Elton began struggling to breath and was rushed to theatre for emergency surgery. He spent the next three weeks in NICU and it was so wonderful to finally be able to take him home.
“Because it’s such a rare condition, it’s difficult for the experts to tell us much about the future at this stage but Elton is doing well and we’re all learning how to cope. We’re told he can’t have solids until he’s at least two due to his oesophageal muscles not forming properly, but he is such a little fighter and the happiest little boy, always smiling.
“We had no idea what this condition was, we’d never heard of it, so finding the TOFS charity and being able to use them as a resource for information and invaluable support was a lifeline for us.”
Charlotte is delighted to be partnering with the TOFS charity as their first celebrity ambassador and hopes to help raise the profile of the fantastic work that they do. The charity’s vision is for anyone born with OA/TOF to be able to live life unlimited and work towards a world in which those born with these conditions live long and healthy lives.
TOFS works hard to increase pastoral support to its members, including their families and carers, and adults born with the condition. It also works closely with clinicians, researchers and other support groups to achieve improved healthcare outcomes in the long term.
Charlotte continues: “I’m so proud and honoured to be working with TOFS. They’re doing fantastic work and I’m looking forward to being a part of that and helping to make more people aware of OA/TOF. This is so important, particularly post-Covid, as one of the symptoms post-surgery is a ‘TOF cough’, which can sound like Elton is sick, when he isn’t.
“He can also stop breathing and take a big gasp as his windpipe is ‘floppy’, which can be alarming to others, especially when we’re out in public or at the mother and baby groups! It would have been less traumatic for us as Elton’s parents if we had been aware of the condition when he was diagnosed, so I feel passionately about raising more awareness to try and help other parents in the future.
“It’s also so important that GPs are better educated about the condition. I had to explain it to my GP and nurse during Elton’s first check-up, so there is certainly work to be done there too, and I’m looking forward to all the exciting opportunities that lie ahead for us to get the message out there.”
Diane Stephens, CEO of TOFS, says: “We’re thrilled to have Charlotte join us in this important ambassadorial role. Charlotte brings a passionate and vocal influence along with lived experience of the challenges of OA/TOF, and support like this is vital to our work. We hope she gets us heard and talked about, and we’re privileged to have her on board.”
