My daughter Ellie-Mai suffers from a very rare genetic syndrome called temple barister syndrome. Ellie's condition comes with many complications, such as not knowing what is safe and what is not. She is nonverbal, so she can not tell us if something is wrong. She is one of 14 in the world with this condition. 2 years ago, we started this journey to get our house sorted to make it as safe as possible for Ellie; we were contacted by a company that had done some charity work and they was going to do all of this for us. However, things kept getting pushed back due to covid and then for the past year, we have received no contact at all; this was heartbreaking for us all. Ellie needs a fully padded room to be safe during a seizure. We want to raise this for her to make all areas of the downstairs safe for play and for her to be able to feel like part of the family in the house and also the garden.