Save the date 1st November 2025, Syngap1 UK annual conference. More details to follow
Stanley was born a happy and healthy little boy. It was not until he was about 8 months old and then he slowly started missing his milestones. At 18 months old we had a diagnosis of hypermobility and then slowly learnt of many other delays and at 3 years and 3 months came an autism diagnosis. In early 2019, we finally received the Syngap1 diagnosis when Stanley was 5 years old. The reason behind all of his delays. Stanley attends a fantastic specialist provision school and is slowly making progress in all areas. He is non verbal and uses makaton sign mainly for communication. His main struggles are transitions, obsessive behaviours and sleep problems. He can become anxious and frustrated which can result in aggressive and extreme behaviours. Despite the challenges he faces Stanley is mostly a very happy and very loving little boy. He loves music, balloons and aeroplanes and anything that flies! He has a great sense of humour and an infections laugh. We work hard to support Stanley and are very fortunate to have great family and friends supporting us. He is a very loved little boy and has the best little big brother he could ask for.