On Tuesday 14th of February, Joel James MS met Naomi Webborn from TOFS charity in the Senedd to learn more about Oesophageal Atresia and Tracheo-Oesophageal Fistula (OA/TOF), one of the UK’s rarest conditions.
Since the charity was established 40 years ago, it has become the largest charity internationally for those born unable to swallow. Despite this success, it continues to be the only UK-registered charity assisting families affected by the condition. TOFS is committed to providing medical information for parents, working with clinicians, and ensuring anyone born with OA/TOF can live unrestricted.
By speaking to Naomi, an OA/TOF TLC Mum, Joel was able to learn about the rare congenital condition, which affects 1 in every 3,500 people. Naomi also discussed the possible implications for those affected and their families. The event intended to raise awareness of the condition in Wales and the need for better transitions from paediatric to adult care.
At the meeting, Joel said:
“I was really grateful to meet Naomi today. I will be honest, until today, I had no idea that Oesophageal Atresia and Tracheo-Oesophageal Fistula existed, and I can’t start to imagine the impact it must have on people’s lives.
“TOFS is a remarkable charity, working exceptionally hard to raise awareness about this rare medical condition. I look forward to championing their cause in the future and supporting them in any way possible.”
Oesophageal Atresia is a birth defect of the swallowing tube that connects the mouth to the stomach. The upper and lower sections of this tube do not connect, resulting in the inability to pass food from the mouth to the stomach. OA often occurs with Tracheo-Oesophageal, another birth defect where the oesophagus is connected to the windpipe.
