Hello, my name is Marie and I live in a beautiful village in East Sussex with my wonderfully supportive husband Mike and our two amazing children Henry (6) and Dottie (4). When Dottie was around one years old we realised she wasn’t developing as expected and she also started to have seizures. The consultant who had been keeping an eye on us ‘just in case’ since Dottie was born asked me if I worked as I was going to be very busy with appointments. He wasn’t wrong; within six months we were being seen by several consultants in different departments at GOSH and doctors and therapists locally as well. When Dottie was around around two and half our genetics consultant told us it was highly likely Dottie has a genetic condition, probably rare, maybe as yet not discovered. Despite all we have been through so far this still came as a shock. It meant she wouldn’t just grow out of all of this as lots of friends and family told us to try and reassure us. It finally dawned on me that this is why all the doctors we were seeing were scratching their heads and not giving us any answers. It was some time after this during one of my many late night google searches that I came across SWAN UK and realised we were not alone. Just that on its own gave some reassurance. I’ve stopped my internet searches for now as they are not helpful and cause more worry and sleepless nights rather than provide reassurance. Both me and my husband practise living in the moment, living for now. We have two wonderful children who are both so very happy and give us so much joy and teach us more than we ever thought possible everyday. We don’t know what the future holds or if we will ever get a diagnosis but for now that’s fine. We are not alone.
Parent Rep, Sussex