Our daughter Adelaide has a condition called STXBP1- which presents with severe learning difficulties and, on most occasions epilepsy. With only 40 children in the UK diagnosed and just over 1000 worldwide, the condition is extremely rare , and a few people knowing about it. Many children with the condition will require therapy for lots of developmental delays; speech and language as most children are Non Verbal (including Adelaide) along with Physiotherapy and Occupational therapy to name a few and most will need adaptations and assistance throughout life to be safe and able to access the world around them. However, there are really exciting times ahead for the STXBP1 community - the possibility of not just a treatment but a potential cure in Gene therapy. Studies are already taking place in the US but more funding is needed to ensure the vital research is continued to allow the children with STXBP1 a chance to potentially receive this cure over the upcoming years. Adi's Sunshine is a fundraising group devoted to helping in this mission to contribute to raising awareness of the condition and providing funding for more research opportunities.