Hi I’m Michelle. I’m mum to William and James and we live in Barnsley South Yorkshire. Our Swan is James who is 5 and still mostly undiagnosed. From birth James was poorly with seizure like activity and respiratory problems. We just assumed that the first consultant that met us would know what was wrong, diagnose the issue, start treatment, get James better and our lives would get back to normal! The first 2 years of James’ life is just a horrible blur of tests, operations and hospital admissions. We were terrified, isolated, sinking fast and had no one to turn to because we had an undiagnosed child so we never ticked the right boxes. One day a nurse on the ward mentioned SWAN UK, which was a lifeline for us as we weren’t alone. There were other families out there that were fighting similar battles to us. The feeling of not being alone any more was empowering, I have made some wonderful friends who quite simply ‘just get it’. I have really enjoyed organising events and local meet ups whether it is visiting a family in hospital or just having a quick coffee with a swan mum who just needs someone to listen.
Parent Rep, South Yorkshire