I’m Jo and I live just outside Portsmouth with my husband Alex and two daughters Megan and Connie. Megan is five and is our swan. Apart from some food allergies and maybe taking a little longer than expected to master sitting and walking Megan gave no indication that anything might be wrong until well into her second year. At 15 months old I noticed her progress seemed to have slowed and by 18 months I was concerned that she had stopped making the speech sounds that she had learnt. I spoke to our GP, and he referred her to our local hospital. I wasn’t really expecting what came next, however, life since has been a non-stop whirlwind of genetic tests, MRI scans, EEGs, and countless appointments, none of which have given us any clue as to the cause of Megan’s difficulties. She experiences periods of regression, periods of progress and has a real mix of strengths and difficulties. Her greatest difficulty is with spontaneous communication, she also has gross and fine motor difficulties which are slowly deteriorating. However she loves drawing despite her challenges with holding a pencil, and is fast becoming a great reader. I have been a member of SWAN UK since late 2016. In February 2018 I attended one of their information events held in Southampton. It was such a fantastic experience to sit and listen to medical professionals talk about genetic testing, genome sequencing and the importance of diagnosis. It made such a difference to realise that there were other families struggling with the unknown, and a whole raft of medical professionals out there looking for answers. For me, having knowledge of the work currently going on into understanding rare disease is empowering, it gives me strength and helps to remove that nagging self-doubt that not having a diagnosis means – that as a parent you have somehow overreacted or got it wrong. I knew straight away that I wanted to become more involved with the work of SWAN UK to help share the knowledge and understanding of living with undiagnosed conditions, that will ultimately help other families in similar situations to mine. I’m looking forward to taking on the role of Parent Rep, raising awareness of the work of SWAN UK, and getting to know more families in my area.