Hi All! As most of you already know, our son Rohan was born in 2019 with long gap pure oesophageal atresia - he was unable to swallow. From birth, he was transferred to the NICU, followed by a 6-month hospital admission, with a long ITU stay and multiple surgeries. Since we brought him home we have had an unpredictable and challenging journey with a further 7 GAs and two major surgeries. He was the first child in the UK to have a tension suture technique to repair his oesophagus. The surgeons learnt so much from Rohan‘s journey and have since improved the lives of many children born with OA. It seems so far that Rohan has had an unprecedented journey. The last surgery he had to minimise his severe reflux has unfortunately left him with gastroparesis (stomach paralysis). We have been told that his stomach may never recover function. We have managed to stay afloat with the support of our family friends and the TOFS charity. I am running the London marathon this year (despite only having had a baby girl five months ago) for TOFS. The TOFS charity is one very close to our heart, helping the lives of thousands of families. TOFS is the source of hope, positivity and reassurance. They’ve helped to answer many of our questions and has provided light in times of darkness. Please please donate money in support of this brilliant network. Thank you for taking the time to read this page and donate. Amreeta
