[Support system for families with sick children who need medical care at home]

I reported an experience of my family which had a child with a severe chronic neurological disease (subacute sclerosing panencephalitis, SSPE) and activities of private groups to support children with intractable diseases and their families in Japan. Home care system for these handicapped children is very important and meaningful to increase "quality of life" of them and their families. However, their families have to have a lot of physical, psychological and economical stress to perform it. We cannot say that the present supporting system in medical and welfare fields in Japan is sufficient yet. Japan Welfare of Children and Families Association is a foundation to support children with intractable diseases and their families. This Association has done telephone counselling for their families, symposium for the care of them, summer camp for these children and publishing newsletters. However, it is very difficult to gather volunteers and donations as compared with those in other countries. The reason is not only the differences of culture or religion, but also the tax system. In Japan, a donation to a private non-profit group is not tax-free unlike the United States or other countries. We have to do many things to support these children and their families.