Feeling isolated and alone with a severe rare disease

My husband and I have tried to do many things to support our daughter diagnosed with metachromatic leukodystrophy, rare terminal brain disease 3.5 years ago. Since she has become very sick, completely paralyzed within a year now on hospice care. It feels like noone understands and people look at her terribly. We recently went to a leukodystrophy conference where a fellow medical parent kept asking each member of the family why we needed an electric lift and nurse. It was extremely upsetting because even in a setting where we should have felt comfortable and understood, another let down of non support for our girl suffering horribly. All of her previous girl scout friends, neighbor friends, family have turned their backs on us not wanting to deal with the severity of her progressing braain disease. Before Amelia got very sick, and lost her ability to speak she wanted to be heard. We took her to DC where legislators listened to help save lives. Now in her time of need our communities haver turned their back to her, how can we support her better?